The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.” AEA is so appreciative of this personal sharing by all who loved Rita.
In March, my family suffered the devastating loss of my mother, Rita Wicke, as a result of improperly diagnosed and mismanaged autoimmune encephalitis. In Rita’s memory, we have requested donations be made to the Autoimmune Encephalitis Alliance. Our hope is that no person has to suffer the way that my mother did and that no family has to go through what we went through over the last ten months of my mother’s life. I’d like to share a bit of Rita’s story.
My Mom, Rita, was an amazing person. She was always upbeat, gregarious, and full of joy – one of her favorite songs to listen to was “Happy” by Pharrell Williams. She was known for her thoughtfulness and creativity; Mom was known to send cards and gifts to friends, family, and pets “just because”, and she loved to celebrate quirky holidays like “National Toast Day”. She had a great sense of humor and loved puns. She adored children, and she was so excited to become a grandmother – in fact, she had even set aside a tote of books and toys for “if” she ever became a grandma. She was a worrier, and she never did anything dangerous – for example, she was terrified of flying on a plane, and we always used to poke fun at her for her slow and cautious driving. She was social and talkative – family and friends would regularly get stuck on the phone with her for hours at a time. She loved to cook, bake, and entertain, and hosting family and friends for holidays was one of her favorite things to do. And she loved to tie everything together with a theme. We sometimes joke that my Mom was the original Pinterest before it existed. One of her passions was collecting teddy bears; her entire house was filled with bears decorated to match the upcoming holiday or reflecting the activities of her children. Her family was everything to her; she was an incredible daughter, wife, sister, and mother.
My Mom started to exhibit some strange behaviors the week before her 61st birthday. She mentioned that she had not been sleeping, which we chalked up to stress given that my Dad was recovering from a major stroke that happened in December 2015. She had closed all of her credit and debit cards because she feared that her cell phone was taking pictures of the cards in her purse – we knew that my Mom tended to overreact at times, so we found the behavior irrational but not completely bizarre. She had also called the police one night saying that she was a “bad mother.”
On my Mom’s birthday, April 30, her friend Gretchen took her to the emergency room in a nearby town. My Mom was acting very strange when Gretchen stopped by for a visit; Mom was ranting about being a bad person and said that the family was going to come over and shoot her with a gun in the garage. Gretchen managed to get my Mom into the car and drive her to the ER, though my Mom thought that Gretchen was “in on it” and was going to drive her to the executioner.
A social worker in the ER said that my Mom’s symptoms resembled someone with schizophrenia. Mom continued to act strangely and acted very suspicious and paranoid. At one point, her head started involuntarily nodding. She was transported to St. Mary’s Hospital in Madison and was medically monitored for the night. The next day she was moved to the psychiatric ward, where she stayed for three days. She was put on psychotropic medication for anxiety and was released.
The following weekend was Mother’s Day. The family spent the late morning and early afternoon with Mom; we made waffles and decorated flowerpots. My aunt later reported that during a phone conversation my Mom could not remember if our Mother’s Day visit was real or something she had imagined. The next week Mom was back in the ER after exhibiting more strange behavior; she was moved to the University of Wisconsin Hospital psychiatric ward for the night, then moved to St. Mary’s psychiatric ward the next day when a bed opened. She was again given psychotropic medications and cleared to go home after a couple of days.
After returning home, Mom continued to have what appeared to be “panic attacks”. At one point one of my sisters took Mom to the ER because she thought she was having side effects from her medications. My sister decided to keep my Mom at her house where she could be supervised all day. While at my sister’s house, Mom’s condition continued to deteriorate. She started wetting the bed at night. She would barely speak and would sit in a near catatonic state. She would clench her teeth with a strange grin on her face. She had delusions that the family was trying to poison her and that she was dead and the family was haunting her. We decided that Mom needed to go back to a psychiatric facility, but we did not want her to go back to St. Mary’s where she just seemed to get worse. We consulted with her insurance company and found that we could take her to Rogers Memorial Hospital, a specific behavioral health facility, in Oconomowoc.
Mom stayed at Rogers Memorial Hospital for a couple of weeks. The psychiatrist attributed her condition to psychotic depression and once again changed her psychotropic medications. When we would go to visit, Mom would rarely talk. When friends and family came to visit, she would tell them to leave, which was very uncharacteristic of her (Mom never wanted people to think that she was ungrateful or rude.) But mostly she would just sit there, sometimes coloring. She had lost interest in doing anything.
After she returned home from Rogers Memorial Hospital, we saw no improvements, though occasionally she would have a “good” day where she was almost completely herself. During this time, she again went to live with my sister. Her behavior continued to be bizarre – sometimes she would not eat or drink anything and she didn’t enjoy any of the activities that she used to love. She became convinced that she and my Dad were divorced. Mom started to behave in very dangerous ways. She tried to walk in the road in front of moving traffic and would attempt to get out of the car while we were driving. When asked why she was trying to go in the road, she said “Because I have to. Because they are going to shoot me.” She actually did get out of the car and went into traffic on one occasion. My sister and her husband installed alarms on the doors in the house to prevent my Mom from leaving in the night.
After some of the dangerous behaviors, we took my Mom to see her outpatient psychiatrist on July 7. During the visit, the psychiatrist noticed a facial droop on one side. She was worried that my Mom was having a transient ischemic attack or a stroke. We spent the day and evening in the ER at St. Mary’s getting brain scans and various tests. They diagnosed her with neuropathy and released her.
My Dad and I took Mom to her primary care physician on July 9. During the visit I expressed my extreme worry for my
Mom’s safety and I begged to get a referral to get in home nursing services for her. We asked about my Mom’s weight, which was down about 20 pounds from just a few months earlier. The doctor said she would put in a referral for home health, but that referral was denied. My Dad decided to take my Mom back home, and he took off of work for a couple of days to stay and monitor her.
On July 13, my family was dealt a major blow. My Dad had to return to work and my Mom was left at home for the day. Throughout the day people called to check in on her and Gretchen even stopped by for a visit. When my Dad returned home from work my Mom was missing. The car was gone, and she had left her purse and cell phone behind. My family frantically searched for my Mom for almost three hours before we got the news that she had been involved in a very serious car accident. In the accident she had struck five other vehicles. She was injured, as well as two other people. The police had arrested her at the scene of the accident, and she was taken to the University of Wisconsin Hospital for her injuries. As a result of the accident the police decided to pursue a Chapter 51 involuntary commitment. My Mom was moved to the psychiatric ward at St. Mary’s Hospital. She was transported by police in handcuffs as though she was a criminal and not someone who was very seriously ill.
Mom was kept at the psychiatric ward for over a month. Her behavior continued to be very bizarre. She became very obsessed with money and would constantly say that she didn’t have money to pay for her stay. She regularly asked my Dad to buy her lottery tickets. After her stay at the hospital, she was moved to a step-down facility before transitioning home. She acted very bizarrely in the step-down facility; she would pace for hours – so much in fact, that she actually wore sores into her feet. She constantly had delusions that the police were coming to take her away. She commented that things looked “old” or “new”, “too big” or “too small.” At one point she said that she knew people didn’t like her – she knew this because she saw a dark cloud over them. She’d often talk about things disappearing; we would ask her about decorating with her teddy bears at home, and she would say that they had “disappeared.”
My Mom eventually moved back home, and my Dad hired a private agency to provide care and supervision for her while he was at work. We hadn’t seen any improvements in Mom’s behavior. My Dad took her for neuropsychiatric evaluation, which ended up being a dead end. The results said that she had low cognitive functioning and to come back in a year; my Mom had never had cognitive issues in the past.
One night as my Dad was working with my Mom in the kitchen she disappeared into the basement. She came back upstairs and went into the bathroom. After a few minutes he checked on her, and he discovered that she had tried to drink Drano. My Dad took my Mom to the ER at St. Mary’s Hospital, and despite the fact that she was on a Chapter 51 commitment, the psychiatrist in the ER sent her home. The next day my Dad and I took my Mom to her outpatient psychiatrist. She told the psychiatrist that she was trying to commit suicide. The psychiatrist refused to let us leave until she had my Mom committed at St. Mary’s psychiatric ward again.
During this stay at St. Mary’s, Mom’s condition worsened. She lost all ability to toilet herself or maintain her hygiene. She struggled to do simple tasks, like putting together a puzzle. Finally, our family was called in for a meeting. We were told that my Mom had a rare form of executive functioning dementia. They anticipated she would have three to five years to live. We were absolutely devastated. We decided that Dad would take Mom home until she declined to the point of needing to be in a memory care facility.
In November, my Dad got to a point that he could no longer care for my Mom; it was too difficult to provide her with supervision and to motivate her to do things that most of us take for granted, like taking a shower or using the toilet. He reluctantly had her moved to a memory care facility close to their home. In the memory care facility, the staff struggled significantly with my Mom. She was very difficult and was essentially impossible to communicate with. She would become very agitated very easily and would not comply with instructions. Her vocabulary became very limited; she would say “no” and “listen” over and over again. Any question that you asked her would receive a response of “no.” She would say “no” to having something to eat, then binge ate uncontrollably.
The night before Thanksgiving, my Mom’s first grandchild was born. This was the moment she had dreamed of for so long. On Thanksgiving, my Dad and my sister struggled for hours to get my Mom into the car to visit her grandson, but she grew very agitated and refused to get in the car. Days later, when she did visit, she was very agitated in the hospital room, and kept trying to leave. She showed very little interest in the baby.
In the meantime, one of the psychiatrists at St. Mary’s had put in a referral to UW hospital to have my Mom evaluated through their neurology department. The appointment came to fruition in December. My brother took my Mom to see Dr. Suzanne Seeger at UW. After the initial visit with my Mom, she stated that she did not believe this was dementia, as the onset did not fit the characteristic pattern and my Mom was relatively young still. She ordered a week of testing at the UW hospital.
After Mom’s hospital stay, she returned to the memory care facility. The week before Christmas, my Dad ended up taking my Mom to the ER because she had a cellulitis infection in her finger. She remained hospitalized through December 26 and was cleared and released. Only three days later she was back in the ER; her finger was black and had doubled in size. On December 29, her finger was partially amputated because of a bone infection.
My Dad and I took my Mom to an appointment with Dr. Seeger in early January. She had some good news for us. The results of the extensive testing had come back. It appeared that what was ailing my Mom was some sort of autoimmune disorder – either Lupus or a form of autoimmune encephalitis. Regardless of the condition, she mentioned that the course of treatment would be the same; high dose prednisone and possibly other immunosuppressant therapy. We were elated to learn that this was not executive functioning dementia; there was hope for improvement. There was hope that we could get my Mom back.
At this time, there was an interesting intersection of events; in mid-December, my coworker suggested that I read Brain on Fire by your board member Susannah Cahalan. As I read the book, the story had so many similarities to my Mom’s. So upon receiving the possible autoimmune encephalitis diagnosis from Dr. Seeger, I felt a surge of relief, especially knowing of Ms. Cahalan’s amazing outcome.
After months of being improperly treated with drugs for psychotic depression and Alzheimer’s disease, my Mom was finally moved to steroid treatments to tackle her brain swelling. Because she was oftentimes agitated, the staff at St. Mary’s restrained my Mom by tying her to the bed. The first night of treatment she had a major seizure and ended up in the ICU. She remained hospitalized for quite some time while she received the remaining prednisone treatment and then was moved to immunoglobulin. Throughout her hospital stay she was restrained – as my Dad said, they kept her in a “tent bed” so that they could leave her unattended.
My Mom received terrible care at the hospital. It was clear that the staff did not like her because she was a difficult patient. They would ignore her and leave her to sit in her soiled depends. During one visit, I found her eating lunch unsupervised, and she was covered from head to waist with spaghetti. I was furious, considering that she was to be supervised during meals. We managed to get a meeting with one of the hospital administrative directors and my Mom’s care team. They said that her condition was a form of autoimmune encephalitis, and we discussed her treatment and next steps. She WAS improving; she was starting to be able to use the bathroom with some assistance. She was also starting to act a bit more like herself and was communicating more effectively. Her vocabulary was expanding again. It was decided that my Mom could return home after her hospital stay. The care team also mentioned that they had detected cancer antibodies, but they were unsure of whether there was; they would order a PET scan to be completed the next week.
The next week came and went with no PET scan. I talked with the administrative director from the hospital, and he said that they were referring her to the UW Hospital for the PET scan, as they had a better equipped facility given my Mom’s need for sedation. The scan was scheduled and was set to take place the next week. But that week came, and my Dad received a phone call saying that insurance had rejected coverage, so the appointment was cancelled. At this point, my family hired a private patient advocacy firm to get the PET scan scheduled.
On March 9 I got a call from my Dad around 6:30 am. He said that he had awoken to find my Mom laying on the couch with burns on her face and her neck. She had somehow managed to start herself on fire during the night. He had called the paramedics to take her to the hospital. At the time, we had no idea of the severity of my Mom’s condition. I started to go about my day, feeding my son Henry with plans to go to the hospital in a couple of hours. My sister called me and asked if she should come home from Chicago – I told her to play it by ear, as we weren’t sure of my Mom’s condition. She then asked me point blank if I thought my Mom was going to get better. I said that I did believe so – she had made progress, albeit small, on the steroid and immunoglobulin treatment. While on the phone with my sister, I missed a call from my Dad. When I got off the phone, I listened to his message. He was sobbing and said that my Mom was not going to make it. I called him right away and said I would be to the hospital as soon as possible. I hung up the phone and just started screaming.
At the hospital, we discovered that my Mom was suffering from third degree burns on roughly 15-20% of her body. My Dad had no idea of the extent of her burns because after burning herself, she had changed her clothing; he only saw the burns on her face and neck which were second degree. The burn surgeon said that unfortunately the quality of her skin was too poor to complete any sort of skin grafting; we had no choice but to move my Mom into hospice care. While waiting in the burn unit, I got a call saying that the PET scan had been scheduled; I declined the appointment as we were now at the end of the road for my Mom.
At the hospice facility my Mom became very lucid. She told my Dad that he deserved a standing ovation for all of the care he had given her and for all of the trouble she had caused. She told us that she was going to host Easter, and that we should all plan to come to her house for lunch. She also said that she couldn’t wait to get out of the hospital so that she could play with her grandson. Throughout it all, she seemed to have no idea of her dire condition. At one point she said to my sister that the doctors said there was nothing that could be done about her burns, so she would just have to heal on her own. It was absolutely heartbreaking.
My Mom became unresponsive on Friday and she passed on Sunday morning, surrounded by family.
My entire family is devastated by the loss of my Mom. In a very short time, we saw her change drastically. Her voice changed. Her physical appearance changed. Her personality changed. If anything, we hope that by sharing her story and supporting the Autoimmune Encephalitis Alliance that we can bring some meaning to her death. The public needs to be more aware of this devastating disease; the medical community also needs to be more aware of it. We also faced significant challenges fighting for my Mom’s care with respect to insurance. On more than one occasion, appointments were cancelled or treatment was denied due to insurance issues; we can’t help but believe that with prudent diagnosis, care, and treatment, my Mom would still be with us today.
Additionally, we’d like to see more attention paid to autoimmune encephalitis in the aging population, in people like my Mom. I recall reading in Brain on Fire that people may be misdiagnosed with dementia when they may actually have a form of autoimmune encephalitis. This was certainly true in my Mom’s case; the doctors were quick to conclude that she had executive functioning dementia and were ready to give up on her. Please accept these donations in memory of Rita Wicke. We hope that they can make a difference for your organization and for others facing this disease.