Elizabeth (Betty) Philips--Lewy Body Dementia

Lewy Body Dementia - Our Journey

Elizabeth (Betty) Philips

Editors
Joseph F. Yukish, Jr., PhD, Emeritus Professor of Education (Betty’s Brother)
Commander Kelly M. (Mezan) Fath, Chief, Marine Medicine, Office of
Health Services, US Public Health Service Commission Corps (Betty’s Daughter)

© Copyright 2024 by Elizabeth (Betty) Philips

William (Bill) K. Philips. Photo courtesy of the author.

I have written this story about the journey my husband and I undertook as we grappled with Lewy Body Dementia. My intention in sharing this story is to offer comfort and guidance to any readers who may have a loved one navigating the complexities of this condition.

Bill and I got married in 1992. We were divorced from our first spouses and sought to give each other a peaceful and happy life. We were married for 31 years. We never argued; life was good. I never got to travel with my first husband. Still, with Bill, we went to the beach many times, enjoyed three cruises, visited family out of state, went to a Clemson game, loved visiting Charleston and Savanna, Tucson, AZ, and New York, and visited the Baltimore Mansion in Asheville, NC, three times.

Bill was an elementary science teacher and a football coach for 37 years, and I worked as a clerical employee at our local water authority for 23 years. Bill helped me raise my three daughters. He never questioned and always was the first to volunteer to help them with whatever they needed. He was such a gentle and giving stepfather and husband. Bill also had a daughter, and between us, all 4 of our daughters got a college education, and we helped pay for 3 of their weddings. Bill and I would go to movies, shop, eat out, and visit friends. He loved books and bookstores. Many Sunday afternoons, we would be hanging out at the Barnes and Nobel, me reading a magazine and eating a cookie, Bill finding yet another couple of books to read. Later on, after the disease began to progress, our activities were limited, but still, together, we would do as much as we could. Sports and football were always in his heart, even until the end. When he couldn’t coach anymore, our grandson, who Bill coached, would take him to football games at the high school and college, his Alma mater. This brightened his days, and the coaches and players always welcomed him. It wasn’t until after his passing that we learned what he was to his community. So many people would tell us how he had significantly impacted their lives. He was respected by so many.

His bout with Lewy Body Dementia (LBD) worsened in 2022-2023. Bill died on February 4, 2023. He was 76. The disease started 10 or 12 years before he died. There were many signs, but we never paid attention to them. He would kick, scream, and yell in his sleep. He would say someone pulled his legs, and squirrels bit his toes. These actions ripped the bottom sheet and mattress pad. The bed shook, and sometimes I would get bopped with his hand fighting off whoever he was dreaming of, and eventually, I had to sleep in a separate bed to prevent getting injured during the night during these rants.

Before Bill’s diagnosis, he did not like heights, would not ride rollercoasters or get up on a ledge or ladders. He would drive through the hills and never complained about the height as long as he wasn’t driving on a mountain. However, once the disease began to progress, when we would travel in the car, he would have panic attacks when we would go up or down a hill. I had to drive, and he would sit in the back seat, afraid. It got so bad that he would have difficulty riding to Morgantown, WV, to see his doctors.

One day in 2016, he told me he saw people that were not there. He said men in white suits were running a race in our backyard. Once he said, “Look at those men sitting in a circle in the woods.” He saw a bunch of brush the neighbor was going to burn. He claimed he saw men building a white tree house in the woods, but it was a white house on the other side of the creek. I would tell him to close his eyes and look again, and they would be gone. Later he told me that he had seen these false visions before 2016 but never told anyone. Thinking that these false visions were just a random event because they didn’t happen often, we often overlooked them. Looking back on this now, I think it had something to do with sleep. Nothing would happen after a good night of sleep, and the visions were non-existent. If he didn’t sleep well, he would have these false visions, often and recurring, which were mostly kids, students, and him being a teacher.

In 2019, the eye doctor told us he had cataracts and needed them removed. We thought maybe he was seeing these visions because he couldn’t see clearly. So, we scheduled the surgery. The anesthesia or surgery, we aren’t sure, must have advanced the disease's progress because this is what happened next.

The surgery was on a Thursday. Coming out of the anesthesia, he fought the doctor and nurses. On Saturday, he complained of cold-allergy symptoms and took an allergy tablet he had taken before, Claritin (loratadine). On Sunday, he took another Claritin and another on Monday. Bill went to bed at 10 pm, and I fell asleep watching the news. Bill asked me, “Who in the hell are all these people in the house?” Startled, I woke up and ran through the house, thinking someone was in the house. After realizing this was one of his visions, I told him no one was there and asked why he said that. He said the kids were jumping on his bed and woke him up. With him watching, I checked under the beds and told him no kids. Confused, he said, “Okay then, if nobody is in the house, who is that blond lady with the ponytail sitting beside you on the couch?” There wasn’t anyone but us two in the house. I believe it was when the more severe part of the disease started, and we needed medical help. The next day I called our family doctor, and he referred us to a neurologist in the neurology department at the local university hospital.

During our first appointment (2019), a neurologist (neurologist #1) ran all kinds of tests on Bill--an MRI and CT of the brain, 2 EEGs, drew 21 vials of blood, and a urine analysis to check for infection and abnormal kidney levels that could also contribute to the confusion. At our second visit, this same neurologist, and his resident student, told Bill that he had a version of dementia called: Lewy Body Dementia (LBD). They described the disease as a progressive neurological brain (like Alzheimer's) disease. They put him on a supplement called melatonin and a drug called Keppra (Levetiracetam), given to patients with seizures and neurological conditions. For the first two weeks, Bill had no hallucinations and slept well. However, after two weeks of taking Keppra, the hallucinations got worse. He was still having visions of kids, wooden fence posts were wooden heads, a little boy with a green shirt was, in fact, a garden hose in the neighbor’s yard, and people sitting in the cars were the car seat’s headrests. These people never had faces or mouths and never talked.

Another critical point is Bill was never aggressive nor displayed any volatile behaviors. He knew the visions were not accurate. He knew he was hallucinating but asked to validate that he was not seeing real people.

We returned to his neurologist (#1) and told him about these visions. He referred us to another neurology doctor specializing in mental disorders like schizophrenia, epilepsy, and seizures. This neurologist (#2, Aug 2020) was excellent and told us that Bill did not need the medications neurologist #1 prescribed. He did not have seizures nor epilepsy, or schizophrenia. She discontinued the Keppra and began the weaning process. It took about 6-weeks to wean Bill off the Keppra. She told us we did not need to return to her for a follow-up because she did not know about the LBD and advised us to return to our regular neurologist.

We went back to our regular neurologist (#1). When we returned, he decided to try another medication called Seroquel (quetiapine), prescribed for bipolar disorders, mania, and schizophrenia. This new medication made Bill extremely confused, and he couldn’t talk. Bill knew what he wanted to say but couldn’t get it out. He was only on this new medication for about three weeks. Another doctor (specialist #1) specializing in geriatrics took over Bill’s treatment. This doctor advised discontinuing the Seroquel, but he couldn’t make that recommendation to the neurologist. He also recommended that Bill have his eyes checked by a neuro-ophthalmologist (specialist #2) for Charles-Bonnet Syndrome. This syndrome sometimes causes visual hallucinations, possibly contributing to delusions and confusing visions. His eyes were healthy, and he did not recommend a follow-up and stay with neurology.

Finally, after eight months of trying these different drugs, with no improvement and finding that Bill was sensitive to all of them, the neurologist admitted that he didn’t know much about Lewy Body Dementia because his focused specialty was Multiple Sclerosis. He then referred us to an LBD doctor in another building.

This neurologist (#3, Oct 2020), a godsend, was a specialist in LBD. She was very thorough and the expert, in our opinion. She changed all the medications, discontinued those not working, and put Bill on Nuplazid (pimavanserin), Aricept (donepezil), and melatonin. Finally, we had success. Bill stabilized and regained a somewhat everyday life again for a year. Later she also put him on Namenda (Memantine) for the hallucinations. This medication later proved to be the glue that held everything together and gave Bill a somewhat functional LBD life.

Because Nuplazid is an out-of-pocket medication unavailable in most pharmacies, the LBD neurologist specialist (#3) wanted to try Clozaril (clozapine) on Bill because this medication was proven helpful for LBD patients. I got the Nuplazid from a grant offered by the Pan Foundation and wanted him to stay on it because Bill liked his doctor and respected this LBD neurologist and her recommendations. He wanted to try the Clozaril. To honor his wishes, I agreed with the plan to stop the Nuplazid and begin Clozaril. Our LBD neurologist was not certified to prescribe this psychiatric medication, so we had to see another psychiatrist (#4) to get the Clozaril.

On November 22, 2021, Bill (on Clozaril 15mg) was standing at the top of the stairs calling my granddaughter, who had not arrived at our home. On November 26, 2021 (Clozaril 15mg), he woke me, my daughter, and my granddaughter at 02:30 am, yelling there was a fire drill and we all needed to get out. He was fully dressed and anxious and stated that many people were in the yard. He kept saying, “Hurry up and get dressed.” My daughter told Bill that she called the fire department and that they said all was clear. He replied, “Oh really, great, I’ll tell everyone to come back in.” He returned to bed with no problems for the rest of the night.

Like all the others, we realized this medication was unsuitable for Bill as he was demonstrating sensitivity to the medication. He was having abnormal symptoms. For example, on (December 7, 2021, Clozaril 50mg) Bill was having balance issues again. This medication made him dizzy when he tried to change positions, and his hallucinations, speech, and confusion worsened. He did not sleep that week and didn’t know who the family was. He was urinating in the bed and packed his clothes, trying to leave his house “to go home.” On December 8, 2021 (Clozaril 50mg), he dressed for a funeral and wanted to go home. He called Rick, my son-in-law, and told him I was in a local hospital and wanted him to drive him there. I was watching TV downstairs at this time. This incident occurred at about 02:30 am that night. These events always seemed to happen at 2:30-3:00 am every night. His balance was worsening, and he was worsening. His behaviors were getting bizarre, and after three nights of not sleeping, he slept all night. I think the change in sleep patterns occurred because he didn’t sleep for any of the previous nights.

On December 10, 2021 (Clozaril 50mg), he went with me to run errands. He complained of dizziness and fell three times. I thought his blood pressure was low, and I called the psychiatrist, who recommended that we go to the ER. He was concerned that Bill hit his head during the falls. He wanted a CT scan of his brain, although I told him Bill only fell to his knees. The scan revealed no damage, and the psychiatrist decided to admit Bill for medication adjustment and increase the Clozaril to a higher level because he felt that Bill wasn’t getting enough. Bill was on 50mg at this time, and the psychiatrist wanted to increase the dosage to 100mg that day in the ER.

I agreed to admit him for medication adjustment, but the ER admitted him for falls. I was unaware of this until he took a turn for the worst, and the whole situation became a disaster. During this trip to the hospital (December 10, 2021), we were in the middle of a COVID pandemic. The ER security would not let me sit in the waiting room with Bill and made me stay outside the hospital until they had a room for him back in the Emergency Department. I was so concerned for his safety. Bill was confused, thinking he was at a school, unsteady on his feet, and unable to care for himself. I stood outside in freezing December weather for over 4-hours, watching him through the window. When I went into the bathroom, I asked Bill if he needed to use the bathroom as well. I took him to the restroom and returned him to his seat. Again, they would not let me stay with him. It took The ER staff twelve hours to get him a room.

At about 2:30 am, a staff member told me they had a room for Bill, but I thought the treatment was for a medication adjustment. That is what we asked for. Bill was moving his hand, anxious and moving about the bed. They would not keep his LBD medications and told me to take them home. Once they said he had a room in the hospital, I felt it was safe to go home to get some sleep. My son-in-law was still sitting in my car in the parking lot this time. I needed some sleep and a shower, planning to return in the morning. Confident they would take good care of my husband.

However, I could not be more wrong. The doctor, a resident who took over his care, knew nothing about LBD. This doctor prescribed Zyprexa (qlanzopine), Depakote (Divalproex), and Ativan (lorazepam), among other medicines that caused agitation, confusion, and an unsteady gait. This doctor was unaware that those two medicines, especially Zyprexa, should never be given to LBD patients because patients with LBD have a severe sensitivity to many of the standard neurological medications. For instance, Zyprexa has dangerous side effects that make LBD patients agitated and irritable and causes them to exhibit abnormal behaviors. At 4:30 am, a nurse called me, stating Bill was shouting, exhibiting aggressive behaviors, and fighting with them. She explained that they had to restrain him.

When my friend and I got to the hospital the next day (Saturday, December 11, 2021), we noticed that the staff had assigned a full-time (24-hours/day) sitter to be with him at all times. We found him sound asleep with restrained feet and arms. The sitter said Bill got up that morning and had a pleasant conversation. The sitter explained that they had drugged him and that he had been sleeping while still restrained. Seeing him tied down was very emotional for me. With tears in my eyes, I couldn’t understand why he needed to be tied up when sound asleep. But they were the medical experts. I trusted that they knew what they were doing. Later that afternoon, we left the hospital with a sitter still at his side.

The following day (Sunday, December 12, 2021), I got another call at 4:00 am from a nurse who said they restrained Bill again and that he hit one of the staff nurses. I was so upset. I could not believe that Bill would do that. After 28 years of marriage, he was so gentle, never got angry, we never fought, and he never hit anyone. I pulled up his My Chart in the hospital Patient Portal and saw that the doctors increased his regular medications like Aricept and put him on Depakote and Zyprexa. Previously, in 2021, doctors determined that he could not take these medications due to severe reactions and side effects. LBD patients should never take these medications, and they were making his hallucinations, agitation, irritability, and aggression worse.

The sitters are not allowed to remove the restraints, so when my youngest daughter (also a nurse) and I got to the hospital around 1:30 pm on that Sunday, we were so upset to see his arms and legs restrained while he was sound asleep, laying on his back. My daughter went to the nurses' station to tell the head nurse to remove the restraints because he was sleeping.

For a second time, restraining occurred while he was asleep, not fighting anyone, with a sitter at the bedside. I told the nurse I wanted him taken off Depakote and Zyprexa because Bill has terrible reactions to these medications. The nurse said that she had to speak with the doctor first. Delaying my request upset me even more. I cried all day. I never cried that much in my life. I could not get the vision of the man who walked three miles a day and lifted weights every day, restrained without any opportunity for movement. What is happening to my husband?

The next night I stayed with Bill so they wouldn’t need to restrain him. We were waiting for a room in an annex hospital to the main university hospital, typically used for mental health and psychiatric disorders, to get his medication adjusted. The hospital staff gave him something Sunday after breakfast at approximately 11:00 am. I told them no restraints, and Bill slept until 6:30 am the following day, Monday. It is important to note that Bill slept 19 hours on his back. They never turned him.

At 2:30 am (Tuesday morning), the nurses gave him fluid through an IV because they said his kidneys were beginning to shut down. As they cared for him, Bill remained sound asleep. The following day when he woke, he did not know who I was. Bill thought I was his nurse. He was so confused he couldn’t feed himself, so I fed him his breakfast. I kept praying that they would get a room at the mental health hospital so I could get him out of this hospital and get better. Finally, they moved him later that day.

My youngest daughter came in that day (Tuesday) before the transfer to the mental health hospital next to the main university hospital. She told me to go home and get some sleep and that she would stay with him. He smelled so bad. Because he only got sponge baths from the hospital staff, my daughter showered, cleaned, and sprayed him with deodorant body spray. The shower perked him up while eating his favorite meal, spaghetti. She sent me a picture of him feeding himself. Sitting up in the chair, he looked completely different, more like himself. Because he enjoyed walking, my daughter walked with him around the halls. She said she struggled to keep up with him as they walked around the floor several times. Hearing that he walked with her made me happy. I think I smiled through happy tears for the first time in days.

Finally, they took him to the mental hospital. I could not go with him, but they permitted my daughter to ride since she also worked at this university hospital. The mental health hospital's psychiatrist (specialist #4) called me home and told me we couldn’t see him for 3 or 4 days. A locked unit became his home for his safety and to prevent him from escaping. Observation occurred constantly, and the plan was to strip him of all the prescribed medications given over the past few days and others he was taking. This decision even included his blood pressure pill. They took him off that medication, thinking it caused dizziness when standing. They never put him back on the blood pressure pill, stating his blood pressure was stable and he didn’t need it. The psychiatrist returned Bill to Nuplazid, Aricept, and Trazodone (desyrel), sometimes prescribed for depression or headaches. For sleep, they gave him melatonin and Namenda (memantine), which is a drug prescribed for Alzheimer's dementia. This medication was the glue that held everything together and kept the LBD from progressing as rapidly.

Bill stayed in this mental health unit for seven days and was discharged to me and the family the Wednesday before Christmas (2021). Allowing him to enjoy our holidays was very emotional for Bill and me. He would tear up often and express his love and gratitude to us throughout the holiday season. We were both very grateful that this doctor gave me my husband back when I needed him most. Christmas has always been an emotional time for me because my father passed away during the Christmas holiday season many, many years ago.

Most of the following year (2022) was good. At home, he still hallucinated, but we practiced getting him to close his eyes and look again to control the visions. I would remind him that they were not there. He would get up at night, but we set up activities for him, such as reading books or working on his crossword puzzles; he always would return to bed without too many issues and no aggressive behaviors.

Around April 2021, he started not sleeping well, and the hallucinations worsened. He would always try closing his eyes and opening them, hoping the hallucinations would disappear. He kept trying to get out at night, so I finally put alarms on all the doors. The following months weren’t too bad, but he started forgetting who I was or not even recognizing me at times. He would call me John and ask how my wife was. John was our long-time neighbor, and his wife, my best friend. He would call me other names of his past family members or students. But not Betty. He didn’t refer to me as his wife either. For example, I had 2 Betty Boop shirts, and I would wear them, point to the word Betty, then ask him who I was. He would say, Betty Boop. One day I wore a Columbia T-shirt, and he walked by me and said, in complete seriousness, “Hi, Columbia.” There were other comical times when Bill thought I was an Uber driver because I would take him to the gym and drive him everywhere. Sometimes he would even sit in the backseat. These were the times we could laugh because he was so severe.

In August 2022, our favorite LBD neurology specialist (#3) left for another job. Knowing we were hesitant to get a different doctor, she interviewed and referred us to another neurologist she felt was competent and would be an excellent fit to treat Bill’s LBD. She recommended not taking Bill off the Namenda as this was keeping Bill stabilized. However, this new neurologist stated that Bill did not need the Namenda and took him off this medication.

On October 17, 2022, Bill’s LBD and hallucinations worsened. In Nov 2022, I emailed the neurologist requesting to put Bill back on the Namenda, but he never responded. Instead, his receptionist called me and said the neurologist did not want to continue the Namenda. I called the psychiatrist in the mental health specialty clinic and told him what happened. I explained that the new doctor stopped giving Bill Namenda, so Bill was starting to go downhill. The psychiatrist agreed and put Bill back on the Namenda, but the dosage was not at the same threshold as before, which made him “drop a level” in the disease process. He was getting worse.

My eldest daughter (a nurse practitioner), who lives near Washington D.C., has often welcomed Bill for visits to her home since 2021. He would stay for 7-10 days at a time. She said that he seemed to do well, with no significant confusion events and no aggression. He did have some anxiety with taking his medications organized by day and time. He worried that he would forget to take them. My daughter made him a chart with times/medicines/dosages that Bill would cross off after taking each one. By doing this, he gained some confidence because this was something he could understand. He saw that he had taken his medications, relieving some of his worry and anxiety. Although he was sometimes confused, especially at night, he would constantly reorient himself in the morning. Since this was during the COVID pandemic, she arranged a private tour of Washington DC, the monuments, and other tourist attractions Bill wanted to see. My daughter said that Bill kept conversing with the guide during the 4-hour tour and could quote book authors, historical events, correctly identify structures, etc. Knowing that this tour was explicitly for Bill, we informed him of Bill’s LBD diagnosis. The guide catered to his desires, drove all over the city and surrounding Virginia, and was amazed at all Bill could remember.

In September 2022, Bill asked to revisit the ocean. He was so intelligent and educated about the LBD disease that he knew his end was coming and his disease was progressing rapidly. He would even tell me he would die soon.

Therefore, my grandson took us on a short trip to my daughter’s home in Virginia because Bill was a little better. My daughter took us to Ocean City Beach and reserved a condo for three days and two nights. We all kept a watchful eye on Bill while there so we wouldn’t get separated while walking the boardwalk or that he would not fall. The trip occurred during the off-season, and the crowds were small, so this task was easy. That first night, to prevent Bill from escaping, we sat chairs in front of the door and slept with the front and sliding doors locked and bedroom doors open, listening for him and hoping he wouldn’t escape.

However, Bill did escape while we were all sound asleep. He moved the chairs and left the hotel. His escape occurred early in the morning because my daughter got a call from the city police at 5 am. He was at the end of the boardwalk, 35 blocks from our Seventh Street condo. He told my daughter he wanted to go to Dunkin Donuts (directly below our condo on the boardwalk) and get us coffee. He had a purpose and knew what he wanted to do. However, he walked past the closed Dunkin Donuts and went to a hotel 35 blocks away. Fortunately, he stopped at a hotel to ask for assistance. Bill remembered my daughter’s phone number and asked the staff member at the front desk to call her. Because he did not know where he was staying, the hotel staff called the police to help.

Ironically, he remembered my daughter's cell phone number but not mine. The police officer brought him to our condo unit, and my daughter met them downstairs. Bill was fully dressed, with two mismatched shoes and two mismatched socks on his feet. The policeman said Bill told him my daughter’s life story, her military accomplishments, where she was currently working, and how proud he was of her. He also told the officer about his LBD diagnosis. The policeman told my daughter that he confirmed everything after looking her up in their police security network and that Bill was spot on with her work history. He also told her not to feel bad because this happens constantly with older family members vacationing with their family at the beach. The policeman told her that finding Bill made him happy and even shook Bill’s hand before leaving. Bill explained why he went out and confirmed that he knew he would be in trouble upon returning to the condo. I was upset with him out of concern for his safety but understood that he didn’t do it intentionally. That incident put a damper on our entire day and overshadowed any joy the vacation was to have brought. The next night, we moved a heavy dresser in front of the door and moved Bill to a room in the back of the condo with me. I woke up every time he moved. We left the following day. That was our last vacation.

An essential characteristic of dementia is that when the time changes or when it becomes dark outside, the confusion gets worse. The effect of the nighttime on behaviors is a condition known as “sundowners.” Every night regardless of where we were or if we had company at the house, sundowners occurred. My daughter from Virginia was visiting and thought that increasing the light in the house until l about 9 pm would trick his mind into thinking it was daytime. We turned on all the lights and would do activities such as games, puzzles, or folding washcloths to prevent the sundowners from occurring. However, it was like his mind had taken over his body. He would constantly ask when he could go to sleep. His short attention span prevented him from engaging in activities, and he paced around the house or acted like he was getting ready to go home. You could divert his attention briefly, but nothing could keep his interest long enough.

Bill was like Jekyll and Hyde after five pm. He was not himself. The hallucinations eventually got worse, and he would be up all night. I was exhausted, and Bill was exhausted from lack of sleep. I was burned out, cried often, and no longer felt joy. In the morning, he would not remember anything or would apologize for his behaviors because he had vague memories from the night before. He would feel wrong about all the bruises on my arms caused by him pushing me the night before.

The occasional things would become constant and nightly. Bill couldn’t find the bathroom and would wander about the house, urinating in the closets, thinking he was in the bathroom. He often yelled at the kids (students) he thought he was teaching. The alarms went off as he constantly tried to escape the house at least 5-6 times a week. I was so exhausted from a lack of quality sleep and trying to keep him asleep, or trying to keep him in his room, and trying to keep him from hurting himself or escaping. Bill would move weighty bedroom furniture like it was light as a feather. He threw a mattress at me. Bill would rearrange the twin beds in his room and tear up the rugs, pillows, and socks. He broke things in the house and then would say “they” told him to do that. He would go through the motions of tying his shoes but didn’t have his hands on the shoestrings. He would get dressed, but his clothes were often backward or mismatched.

Doing these things was so sad; this was not him. Bill was a gentleman before this disease. He was friendly with everyone, talked to everyone, loved God and his teachings, and was a well-respected educator. Until now, Bill could shower alone, and I would let him do that, only helping him dress. But there were those times you would have to laugh because of what Bill did. It was like he reverted to being a child or toddler again. One morning, Bill showered but dressed alone. He came upstairs and had his underwear on and a pair of shorts with one leg of his shorts leg over his head and the leg of the shorts over his left arm. He was on a mission. I had to chuckle. He looked so funny. I asked him where he was going. He said, “I am going to the church.” I laughed and said, “I don’t think Father will let you in the church like that, so let's get some clothes on.” He followed me back downstairs, and I got him dressed. It wasn’t Sunday or a church day.

The LBD was getting worse. Our house was like hell house after 5 pm. I would cry and tell him I don’t want to put you in a home; I want to keep you here with me. As a science teacher, he researched the LBD disease and treatments and read books about people with similar diagnoses. He would talk about his findings with my daughter, the nurse practitioner. They would have in-depth conversations about his behaviors, new treatments, research, diet, and end-of-life reality. He understood the science behind this disease. He understood that this was “going” to happen, not that it “might” happen. He would tell our hair stylist he was afraid he would hurt me. He knew that was possible and always regretted what had happened the nights before. I always had bruises on my arms where he would grab me and try to push me down. I would try to talk him down, but if it didn’t work, I would kick him in the leg, and he would let go of me.

I'd like to talk briefly about how I was coping with this crazy disease. We stopped sleeping together about eight years before Bill died because he would act out his dreams, which were his reality, and I would get punched or hit at night while sleeping. The kicking of his feet all night would shake the bed, and the screaming and yelling would keep me up all night. I tried to sleep in a single bed in the same room, but that didn’t work. I always had one eye on him, ensuring he was Okay and still in bed. So, I moved to my room across from his and reversed the lock on his door so he couldn’t get out. The bathroom was attached to his bedroom, so I put an alarm on that door so I would know if he was wandering. I still didn’t get much sleep. I don’t think I slept 3 or 4 hours for a whole year.

I felt guilty because he wouldn’t listen to me, and I feared him hurting himself or me. I would yell at him and sometimes cuss, but I was tired and burned out. I know this now. I had never cussed at him before because it bothered him, so I used this tactic, thinking he might listen and get his attention to get him out of his delirium state.

During the day, he was tolerable. He would hallucinate so often that I could deal with them during the day because I was used to it. It had been happening for years. But he turned into a different person at night, and his behaviors were uncharacteristic. He was so aggressive and was in a different place. Sometimes I was afraid of him, and I was afraid he would hurt me. But then, I would feel guilty because I wasn’t a good caregiver at night. I would lose my patience at night, blaming him for doing this to me, keeping me from sleep, or purposefully waking up, even though I knew he wasn’t doing it on purpose and could not help himself. But during the day, I would laugh because of the crazy things he would do or say that was funny. I was so tired because of lack of sleep I would try to nap during the day, but he would always wake me up.

Eventually, he urinated on the floor at night when he woke up. I couldn’t understand why he wouldn’t use the toilet like everyone else, and I would remind him that he used the toilet for bowel movements. My eldest daughter was home again for a visit, so we put duct tape on the floor from his bed to the bathroom with a big black X in front of the toilet. He could follow the line to the bathroom/toilet instead of going on the carpet. We had him practice getting out of bed and following the duct tape to the commode often. Well, that didn’t work. He continued to urinate in drawers, closets, the bathroom sink, the bathroom laundry basket, and on the carpet in his bedroom. I would get angry and yell at him, even though I knew it wasn’t purposeful. As I said, he reverted to his toddler years.

His psychiatrist suggested getting Bill a potty chair or a urinal. He used them once, then never again. I even placed the potty chair beside his bed, which didn’t work either. Not controlling his urination was so hard for me to accept. I couldn’t stand the mess, cleaning the carpet and the floors every night. Bill was a man who took three showers a day because he was afraid he would smell funny. I heard him get up one night around 2 am, the bewitching hour. I walked through the bathroom, and the floor was wet and soaked with urine. I asked him if he had urinated on the floor, and he said, “No, you peed on the floor.” He never would admit it. It was either me or one of the kids he hallucinated about.

One morning in early December 2022, Bill woke up from a dream and told me there was a train wreck in Waynesburg, and these camels with big, sharp teeth escaped and chased him. I asked, “What did you do?” He said he was afraid and ran as fast as he could. I genuinely feel that this was when the mean hallucinations started coming, and whoever was involved in those hallucinations told him to do bad things to me. He was becoming afraid of his dreams and hallucinations and worried he would hurt me.

As I said before, I always had bruises on my arms. But now, when Bill came at me, he would stick his tongue out of the side of his mouth, and I knew something was about to happen. He also got much more aggressive and seemed like he wanted to hurt me. I would fight back, trying to protect myself, like pushing him with a chair or the broom, and by doing this, I could throw him off balance, startle him, or stop him from coming at me. We later told the psychiatrist about these episodes, and she prescribed Abilify (aripiprazole), a new medication for Bill typically used for schizophrenia and bipolar disorder, stating that if the hallucinations were talking to him, they were the mean ones and were telling him to hurt me. She decided to increase the Trazodone to another ½ of a tablet. She said, “If he begins to drool, shows aggressive behaviors, shows difficulty concentrating or speaking, or if he becomes fearful or dizzy, stop the medication immediately and call the psychiatry department.” It didn’t work, we stopped it, and I called the doctor.

On December 14, 2022, Bill was prescribed Abilify 2mg, causing him to act very strange. He would stand there and just stare at me. He told me to get the robe on the steps and go to the lake and swim. He said, “I’m going to lose two people I love very much.” I said, “Bill, there is no robe there,” however, he made me look four times. He was delusional, teaching school to the grandkids and people who came to our house. He said he was buying a business and then asked me to leave the house.

On the Wednesday before Christmas 2022, Bill woke up around midnight and couldn’t find the bathroom. We had what he called a “man cave” in the basement with a complete bathroom; of course, that’s where he wanted to go. I told him to follow me, and he did. When we got there, I pointed to the bathroom door, and he suddenly charged at me with his tongue out, threw me on the bed, and tried to choke me. He had both hands on my neck and pushed my head up and back like he was trying to decapitate me, using all his strength. Struggling, I pulled both feet up and pushed him off of me. He fell backward, and I fell on the floor and hit my head on the bed frame. I started to cry. He wasn’t hurt, and my crying didn’t even phase him. When I tried to get up, he jumped on me again. I was so afraid and kept kicking and kicking. My daughter was home (the nurse practitioner) and heard the commotion in the basement. She yelled at him to stop and told me to leave. She then told Bill to sit on the chair and take deep breaths. He was in a rage, breathing rapidly and shaking his fists. She was not afraid, and he did listen to her. So I left the room and let her take care of Bill. She got him into the bathroom and put him in the shower, he eventually calmed down, and she got him back to bed.

The next day my daughter talked with him about the incident separately from me. He said he vaguely remembered the night before, became tearful, and told her he did not want to hurt me. She talked with him about getting him back into the mental health hospital to adjust his medicines, explaining that they could give higher doses of medications. At the same time, under observation than we could provide at home. She explained that this was the best for him and that it was vital for him to understand that we were not trying to dismiss him. We wanted him to get back to his standard. He agreed to go back to the hospital and told her that he wanted to go because he was afraid the hallucinations would make him hurt me.

While they were sitting and talking, during one of his lucid times during the day, Bill flipped the conversation and, out of nowhere, told my daughter that she did well at the track meet and that she should be proud of herself. He added that she could do better next year in the high jump. Bill explained that they would work more on her upper body strength, and she could be proud of herself for carrying her team in the track meet. He then got up and left the room. Bill taught my daughter when she was a student, and he coached track in the early 2000s. My daughter was never in track.

During Christmas 2022, my girls and their families noticed that Bill wasn’t acting himself. He was teaching school, talking with the grandchildren like they were still in school. Then he talked with my grandson about sports. My daughters wanted me to put him in assisted living and kept saying, “Mom, it’s time.” They worried he would eventually hurt me and knew the LBD was progressing rapidly. I told them I couldn’t because I wanted to keep him with me and care for him. I was also worried about paying for the assisted living facility. We had the money, but the good facilities were so expensive. And besides, I felt like I could still take care of him. They reluctantly allowed me to keep him at home, but the many behaviors I mentioned continued and worsened until January 2023.

Another incident witnessed by my daughter (the nurse practitioner) while sitting on the couch watching TV on New Year’s Eve 2022 involved the effect of Bill taking Abilify 2mg. He became rigid and started staring straight ahead. His arms and legs were stiff, and his right hand started shaking. I waved my hand before his face, but he only stared. My daughter noticed this immediately and thought he was having a seizure. This behavior lasted about 3 minutes, and he returned to normal and did not realize he had done any of that. Although he didn’t have other symptoms like urine incontinence, it looked like a seizure, and we planned to tell his neurologist.

In early January 2023, the psychiatrist (#4) again added another medication. This new medication was called Remeron (mirtazapine), commonly prescribed for depression. We are not sure to this day why the doctor decided to give this medicine to him. Again, it was another medication that did not work, so we also stopped it, and his hallucinations continued to worsen as the LBD continued to progress.

Bill would start to hallucinate about his deceased parents. He would see his father and mother and say, “Don’t you see them.” Bill said he told his father he wasn’t ready to die, but his dad promised to keep returning until he was ready. His mother would sit, waiting, for him on the sun porch. Bill said his deceased grandfather came to see him; this was the grandfather he was most close to. I would pray to God and ask him to take him home to be with his family that loved him so. His fear of the end of his life makes me tear up because I knew the end was near.

Then one Sunday, in Jan 2023, during the day, he was in the kitchen making five sandwiches. I asked him if he would eat all of them, and he said, “No, they are for my kids I taught at school. They come out of the couch cushions.” I told him to put the lunch meat back in the fridge and save it for another day when they were hungry, and he did. He always tried to open the doors at night, saying he wanted to see what the many people outside wanted. No one was there, but I would tell him you can't open the door at night. You don’t know who these people are; they might want to harm us.

When Bill became anxious or paced back and forth, we would make him fold towels and washcloths. My daughter said they use this task at the Alzheimer's unit for their residents. When he didn't listen to me on nights like this, I told him, “I guess you need to fold towels.” Bill replied, “I hate that job.” I responded, “Too bad, these towels need folding, and I’m busy right now,” So, Bill folded the towels and stopped talking about the people outside.

Later that month, Bill wasn’t acting right on a Sunday night. I tried to work his crossword puzzle with him, but he couldn’t answer any questions. He could always do his puzzles, trivia, Jeopardy, and Wheel of Fortune. I started to suspect something was wrong. Then I tried the word search puzzles, which were always very easy for him, but he would not concentrate, answer me, or circle any of the words, even after I explained my strategy. Later that evening, I told him I was going to bed. It was 11:30 pm. He said he would be right up. I must have fallen asleep and was awakened by him shouting in the kitchen at someone at 12:30 am. I came downstairs and told him, “Bill, it’s 12:30 am. It’s time to go to bed.” He charged at me with his tongue out the side of his mouth, picked me up, and threw me up against the wall. I did not have time to react. I hit my head and started to cry, asking, “Why did you do that.” He said, “They told me to hurt you.” The mean hallucinations were telling him again to hurt me.

I got up and looked at him. He had that same expression on his face. I was so afraid, and I picked up this little end table and held it between us for my protection. This time he charged at me again but hit his head on the leg of the table and cut his head. As it started to bleed, he charged at me again, so I put the legs of the table on his belly and pushed him backward. His balance was so bad that he fell into the leather couch and stopped fighting with me. I then asked him to sit on the chair in the kitchen because his head was bleeding, and I wanted to clean it up. I think this caused the violent behavior to cease. Bill was different, and I think it was because I told him he was bleeding. He was so afraid of getting blood on himself. I washed his cut, put a band-aid on it, and suggested he go to bed. Bill slept for 4 hours that night. But I did not.

My youngest daughter, also a nurse, gets up at 4 am to get ready to work. That morning, I called her crying and told her I couldn't do this anymore because I feared him, telling her, “I think he’s going to hurt me, or I’m going to hurt him.” I told her what happened, and she said, “Mom, we’ve been trying to tell you the same thing for months.” I told her the mental health hospital could adjust his medications like before. So we planned to meet at the hospital, Bill and I met her at the ER, and I had him admitted to the university hospital because the mental health hospital didn’t have a room for him. This time, they told us Bill would stay in the Emergency Room until a room was available, and he remained in the ER for three days before the mental health hospital had a room for him.

This hospital experience was different. They moved the children’s ER to another hospital wing, so we got checked in right away, and the head nurse was excellent. She told me she didn’t like to restrain patients, but I told her she should consider it because I was afraid he would hurt someone, and I told her that now I was afraid of him. That night, they did have to restrain him because he became aggressive during his sundowners. Like before, Bill always had a sitter with him 24 hours a day. These sitters were excellent and would walk Bill around the ER daily. I told the staff who cared for him to talk about the bible, history, science, or school if he seemed disoriented. He even had a caregiver who was a previous student who he coached in football. Bill immediately perked up, recognizing the previous student, and they would talk about football. Bill was now off Nuplazid again since hospital protocol prevented me from bringing his medications from home.

The next day I was there, and he asked the sitter to walk with him. She was so good and took him for his walk once, then another time, and the third time they never returned. The head nurse told me Bill was with his sitter in the ER waiting room and won’t return to his room. So I went there, and the nurse he liked was talking to him, but he wasn't budging. The people there were laughing. I had to laugh, too, because he looked so funny sitting there beside his sitter. I told him there was a surprise in his room, and he was missing it, trying to get him to return to the room with me. He did, but he tried to get back out again. Five of us stood in front of the door so he couldn’t get out, and they called a huge and tall male nurse to help. I told Bill he was in trouble and the boss was coming to his room. It was funny, and Bill looked at me as if to say, “So what.” When the male nurse arrived, he said, “William, what are you up to!” Bill looked up at the male nurse and stuck out his hand to shake, and said, “How do you do? How do you do?” Then he asked the male and head nurses to sit in his room. Bill got on his knees and asked them to pray with him.

The five of us were amused but didn’t laugh out loud. It was so cute to see Bill like that. He calmed down and later said he had to go to the bathroom, so I went with him. The nurses stood outside the door. He wanted to urinate on the floor again, so I asked him to use the toilet. He pulled his fist back to hit me. I told him you better not do that so he pulled his fist back again, and I yelled at him, telling him he better not hit me. The nurses opened the door, took him out of there, and returned him to his room. I went home around eight pm and that night. The ER staff had to restrain him again, and I was okay with that because I was afraid he would hurt his sitter or someone else.

Now, Bill had not been taking Nuplazid for three days. He couldn’t get out of bed when I got to the hospital ER the next day. His balance was so unsteady. They finally got him a room at the mental health hospital and were getting him cleaned up before the transfer. My daughter, the nurse, was with him on her phone, looking up questions to ask him. She was the teacher now, and he knew most of the answers. The security guard came to transport him and put him in a wheelchair because his balance was wrong. He didn’t even know who I was, and I had my Betty Boop tee shirt on. When they tried to get him in the transport vehicle, he didn’t even know how to get in the back seat. My daughter got in on the other side and took his hand to help him get in the vehicle. I kissed him and told him I loved him, and he was on his way to see his favorite doctor at the mental health facility, and he had an Uber driver to take him there. He used to think I was his Uber driver.

The transfer to the mental health hospital happened on Wednesday. The staff was terrific and very compassionate with him. Still, he was slowly declining, not eating or drinking, not talking, opening his eyes, reaching for non-existent objects, or rolling back and forth in the bed. On Friday, his doctor called and asked if they could try fluid because Bill might be dehydrated. Our Living Will stated no fluids should be issued to sustain life, but I told the doctor to try giving him fluids because I still had hope and didn’t want to give up.

The doctor called me on Sunday and told me giving fluids didn’t work because he was not eating, drinking, or walking. He said it wasn’t looking so good. I called our Priest, and he went to the hospital that day and gave him a Blessing, his Last Rights.

My eldest daughter was with me at home, and my youngest daughter, the nurses, and the doctors were in his room. My daughter called us on Face time so we could be there while he got his Blessing, and it was so beautiful. My grandchildren were able to speak to Bill on the phone. The next day, The mental health nurses gave us the okay to come and see Bill. So, my eldest daughter and his grandson went down the next day. He wouldn’t open his eyes. One of the most compassionate nurses kept playing with his hair, saying it calmed him down. She knew he liked her to do that. We stayed for a good while, and they left us alone as I said the rosary with my family. I could see his lips moving, so I knew he could hear us, but he couldn’t open his eyes. We cried because we could see he was failing so rapidly. The doctor said he would not be going home with me. We decided to keep him at the hospital and transfer him to palliative care. The doctor says Bill’s body was still strong, so he did not qualify for hospice.

I knew something was going to happen because the week before we took him to the ER, he would tell me his dad was there, but he was going to go, and he would be coming back. I thought he was dreaming or hallucinating until Bill said his mother was waiting on the sun porch. “Can’t you see her?” he would ask. I would tell him you know your parents died a long time ago. He would say, “Yes, but I know they were here.” Then, one day, he said he saw his grandfather, whom he and his cousin had spent much time with while growing up because their parents both worked.

I started to worry that Bill was dying and prayed all the time to God, asking him if it was Bill’s time. I asked Him to please take Bill home because this person living with me was not Bill. I missed the other Bill. This disease is so awful. Please give Bill peace and take him home with You and the family he loved so much. Bill has suffered long enough with this disease. I was losing it too!

Mental health transferred him to the eighth floor at the university hospital in the step-down care unit. The palliative care doctor was the doctor that checked on him daily and planned to keep him there until he was ready for hospice on the 7^th floor. We then met with the hospice nurses and planned for the next phase in his journey. The plan was to keep him comfortable, cared for and for us to be with him daily and night. At this point, Bill had not eaten, drank, or spoken to us for over seven days. He appeared at times to know people who were there as we noticed he would try to open his eyes or mouth words. Bill responded by calming down when he saw his grandson and granddaughter and tried to open his eyes when his cousin came to visit and talked about old times. He would have periods of apnea and changes in his breathing. But Bill’s body was strong, and it refused to give in. So, we waited.

We never left him alone. Someone from the family was always with him, and because of hospital policy, his sitter never left the room unless someone replaced her. Bill’s cousin Joe and his close friends Bill and Dave came to see him. He knew they were there and opened his eyes a few times for a short time. He would try to speak but couldn’t. His breathing was getting labored, and sometimes he would not breathe, gasping for air or having periods of apnea.

After three days in palliative care, it was time to transfer Bill to hospice. They moved him to the 7th floor, which was the Hospice care unit. The staff there was so compassionate and kind. We took turns staying with him. The second night he was there, my youngest daughter and I stayed all night with him. His breathing was getting shallower, and he would have more periods of apnea, but his body would not give in. I cried because I knew what was coming.

The day he passed, we were there all day, and around four pm, my other two daughters came. My middle daughter was not supposed to visit until the next day, but she brought my eldest to the hospital and decided she would stay the night. Three of Bill’s good friends from “Christ Life” came to see him and prayed over him, asking God to take him home graciously. I think this gave him peace. He was unchanged, clean, calm, and sleeping.

After the girls arrived, I went home to sleep around 5:00 pm. I told Bill I loved him and would see him after church. Bill never wanted us to miss church. I was a canter and told him I would sing for him the next day. Bill always liked when I sang. After I left, it was then his color and breathing changed. My youngest daughter decided to stay so my eldest didn’t have to be alone. All three of my girls, our girls, were with him.

As soon as I got home, the phone rang. The girls called to say he was starting to move on. They let me talk to him. I told him again I loved him and would miss him, but I would be fine. I told him it was okay for him to go and be his mom, dad, grandpa, and God. He was always worried about me. I told him I was so sorry for my mean words because I didn’t comprehend what was happening in his mind. I added that I felt so bad for being so mean when he tried to hurt me because he didn’t know what he was doing. Bill would never try to hurt me if he was his usual self and didn’t have this crazy disease, LBD. We all cried, and the hospice nurse cried with us. After I hung up, I went to the porch and thanked God for helping Bill come to Him and finally find peace without LBD.

The girls prepared Bill for his final journey. They turned his bed to face the window, so he faced the university football field. He had a bird's eye view and would have loved that. It was like God chose this room for him. Bill loved his football and could now see the university football stadium. He also loved his beer. He had a nickname of “Beer.” Knowing this, my daughter secretly brought him a cold can of beer called “Dad Beer.” The plan was for the two of them to have a drink that night, but instead, with the end near, she cracked open the beer, split it between them, and generously swabbed Bill’s mouth with beer. They each told him how much he meant to them, that they loved him, and that everything was okay. And then it happened the apnea period was exceptionally long. They called the nurse, who confirmed that he was passing, so they began singing “Country Roads, take me home” (the university football theme song) and held hands surrounding him in a ring of love. Bill moved on, drinking a beer, and watching football, exactly how he would have wanted it. He moved on. His journey was complete. We believe he was waiting for me to leave and for our three daughters to all be together. Bill moved on his way on his terms.

The moon had a giant halo around it that night. We never saw that before, and then the following day, that same ring appeared again around the sun while I was singing for him in church on Sunday morning. He sent this to us, but primarily to me, to assure he was safe, happy, running, exercising, and back to the man I married 31 years ago.

This story was harrowing for me to write, but I wanted people to see what a terrible disease LBD is. If someone in your family gets it, don’t feel guilty for feeling you didn’t do right by them. Someday, medical researchers will know more about LBD and how to help these patients without experimenting with different drugs because LBD patients are sensitive to many of them. Bill and I lived the horror of receiving the wrong ones.

I would like to thank Accredo, Acadia, who helped me find the Pan Foundation and helped me keep him on Nuplazid for three years with a grant; without this medication, I would have lost him much sooner.

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