My mother also has Lewy body dementia, and this is our story.
By SANDRA SUKHAN
Robin Williams was such a funny man. Every time I watch one of my favourite movies, Mrs. Doubtfire – which is something I do at least once a year – I still break down in belly laughter. When the news of his suicide broke in 2014, I was so saddened to hear that a man with such a great talent for making others laugh could have ended his life so tragically at the age of 63. He was only a year younger than I am now.
Only three months later did the world find out that the beloved comedian had secretly been afflicted with Lewy body dementia, a diagnosis made only on autopsy. The disease meant nothing to me then. But when my world came crashing down in September of 2016, I soon learned what the results of that autopsy truly signified.
The word “dementia” can drive terror into people. It does for me. These days, it makes me fear that some day I will be diagnosed with it too, and the rest of my life will be spent slowly forgetting my loved ones.
Even more frightening is the dementia I am vicariously living with today. In the fall of 2016, my mother, Sharie, was diagnosed with Lewy body dementia, and I have been her caregiver ever since. The road she is travelling is long and rough, and sadly, it will only get longer and rougher before it fades into darkness.
I sometimes chide myself for missing so many signs along the way. What should I have seen? What should I have known? What should I have been paying attention to? What should I not have ignored? What could or should I have done differently?
So what did I know about Lewy body dementia, or LBD, prior to October 2016? Nothing. Absolutely nothing. Even its association with Robin Williams had slipped through my mind.
It’s been a steep learning curve for me. One of the first things I learned is that LBD is often referred to as one of the most common illnesses no one has ever heard of.
Until the summer of 2016, my mother had been an independent person, still living on her own at the age of 87. In my youth, she was what I would readily call a nonconformist. She married my dad in the early 1950s when it was fine in Guyana for Muslims like her and Hindus like him to be friends, but never to marry. She wore pants in the 1960s when women in our culture did not dare do that for fear of being ostracized. She had a job and hired a nanny to take care of us at a time when women stayed home and took care of their children. She drove her own car at a time when only men drove cars. She cut her hair in a “boy cut” and refused to cover her head when ethnically Indian women were expected to wear long hair and cover their heads. That was the woman I knew for most of my life. Even after Dad passed away in 2011, she continued to drive, take care of her finances and generally manage her life.
The nightmare that is now my mother’s life began in the summer of 2016. In retrospect, it may have started earlier than that; but, if so, I missed the signs. That summer, my mother called me in distress about disturbing, vivid dreams she was having. I tried to reassure her. As the dreams became more graphic and troubling, all I could offer her was more reassurance that they were not real. By late summer, she was hallucinating, seeing people fly through her third floor bedroom window and hearing voices under her bed. I continued my feeble reassurances and finally suggested she sleep with her bible under her pillow (she converted to Christianity when I was a baby), as she used to when I was a child, especially when upset or troubled.
One afternoon that fall, Mom called me at work to ask why I was late picking her up. I thought she had accidentally called me instead of my younger sister. She said it was no accident. She claimed I had told her the night before that she needed to go to the store to buy a potted plant and some donuts for the pharmacy staff at the local grocery store. She insisted I told her I would pick her up in a white car (which I did not own) wearing a hat and sunglasses as a disguise. None of this made sense to me. I explained that I had not called her the night before. Agitated, she explained that she knew I didn’t call, but had told her through my eyes.
Thinking a urinary tract infection might be causing her confusion, I rushed to Mom’s apartment to drive her to an urgent care centre. There, after nine hours and a battery of tests, nothing physically wrong was found. In the waiting room, Mom had repeatedly asked if we were going to a puja (prayer) the next day. Whenever she had to use the hospital bathroom, she was sure someone was watching her from outside the door, even though I reassured her I was outside the whole time, alone.
Next, Mom was transferred to an emergency room. There, after a ten-minute assessment, a psychiatrist promptly diagnosed her with depressive psychosis and put her on the antipsychotic drug, Risperidone. I went home and did the only thing I could think of – research. I learned that such a serious diagnosis cannot be made in ten minutes. It takes many months of assessment. The next day, when I challenged the psychiatrist, he said it was just “an initial assessment” and they they would do further tests.
The ordeal continued, and my mother wound up spending seven days in the psychiatric unit of yet another hospital across town. After a series of physical and cognitive assessments, she was given a clean bill of health and discharged.
The peace lasted exactly four days. During a follow-up appointment, Mom had another psychotic episode, whereupon the doctor informed her she would have to go into supportive living or be involuntarily hospitalized. I was flabbergasted.
What the hell was this? In less than two weeks, my mother had gone from being an independently functioning person to a psychotic requiring 24-hour supervision in a locked facility? The doctor suggested I find an interim home for her until she could be assessed for a supportive living facility. That home ended up being my own.
Since I was working full-time, my daughter from Edmonton offered to “grandma-sit” for ten days. That lasted just a few days until Mom’s hallucinations got worse and we ended up at the Crisis Response Centre on Bannatyne. Then she was transferred to the psychiatric unit of another hospital for six weeks. It was there that my mother was diagnosed with Lewy body dementia, or LBD.
I distinctly recall (even though it still feels like a bad dream from which I am going to wake up) the doctor explaining that LBD is a type of dementia with no definitive diagnostic test, no cure, no way of telling how it will progress, no way to reverse the symptoms, no way to tell how long a person has had it and, finally, that it’s terminal, with no clear prognosis and life expectancy. I was making copious notes, which was about as much as I could cope with at the time.
My mother categorically rejected the diagnosis and became angry whenever we tried to talk to her about it. For several days, I struggled to wrap my head around what such a diagnosis meant. My world felt like it was spinning out of control. What I read was downright frightening. Lewy bodies are abnormal protein deposits in the brain that disrupt its function, leading to the symptoms of dementia. LBD is estimated to be the second most common form of dementia after Alzheimer’s disease. Vascular dementia (from stroke damage or lack of blood flow) is the third most common, although there are dozens, including dementia during the later stages of Parkinson’s which is also brought on by an excess of Lewy bodies.
While conducting my own research, in almost every article about the diagnosis and treatment of LBD, Risperidone was specifically contraindicated for people with LBD. There were almost always clear warnings about it exacerbating the disease. Still, it took an additional four months after Mom’s diagnosis to get her off the drug, despite my advocacy with her family doctor and psychiatrist. Ironically, it was Mom’s delusions that saved her: fearing that people were trying to kill her, she refused to take any of her medications, and that was how she finally stopped taking Risperidone. It might well have killed her had she continued.
My mother exhibited many of the classic symptoms of LBD, including auditory hallucinations (less commonly, visual hallucinations); alertness rapidly alternating with confusion; loss of executive function (the ability to make decisions); falls due to distorted depth perception; extreme paranoia; sleep disorder; mood changes, including depression and anxiety; and progressive facial rigidity, so that a smile becomes rare. Everything, from her terrifying dreams to her paranoia and hallucinations, started to make sense to me.
Before the diagnosis, I had attributed almost all of these symptoms to some innocuous cause or another. I have since spent many hours chastising myself for not knowing better. I think of all the times I provided a “reasonable” explanation. I think back on my growing frustration as my mother asked me to take over her banking, then her shopping, then her cooking. I used to think she was conveniently acting needy when it suited her. Now I realized she was just trying to cope. She kept slips of paper with phone numbers everywhere. She had two calendars to keep track of her appointments and birthdays and would circle each new day whenever she woke up so she wouldn’t forget the date. She coped so well that we missed most of the signs of her encroaching dementia. When she could cope no longer, it was like falling off a cliff. Now she is in free fall, and I am right there with her.
I am responsible for every aspect of her life, from managing her finances and cutting her nails to reassuring her no one is trying to poison her. I am watching her lose her grip on reality, and there is not a single thing I can do. LBD is the worst kind of thief. Bit by bit, it is stealing her mind. And we, her family, are left to helplessly witness her torment.
Mom’s hallucinations are no visions of cuddly kittens, enchanted gardens or soothing lullabies. Her hallucinations are gory, grotesque, macabre and violent. She hears the voices of men who want to rape her. Or they tell her her children were killed and dismembered in a blood bath. She hears voices saying I am kidnapped and being held for ransom or that someone has buried me alive. She imagines the medical staff are trying to poison her. This is her daily life. She lives in this terrifying world nearly every moment of every day, with rare interludes of lucidity. There are some drugs that people with LBD respond to well, but for my mother, nothing has seemed to work so far.
Because there can be no definitive diagnosis of LBD prior to autopsy, the most doctors can do is review the symptoms and make an educated guess. By the time a definitive diagnosis comes for my mother, the disease will have taken its toll on our entire family,
Robin Williams was relatively young and had a history of depression when LBD struck. That was perhaps one of the reasons LBD wasn’t even suspected. And if his doctors thought they were only treating depression, they may have prescribed medication which could have worsened the symptoms of his dementia. After Williams’s death, his wife explained that the easygoing man she used to know and the tortured one he became as the disease overtook him were agonizingly different. Before he died, Williams was diagnosed with Parkinson’s disease, but it wasn’t far off the mark: Lewy bodies also cause the dementia that eventually afflicts some people with Parkinson’s.
My mother isn’t famous, so she won’t get the same attention as a celebrity with LBD, but this disease plays no favourites, and our families share the same anguish and heartbreak. Mom keeps asking me to take her away from the personal care home where she now lives; she believes I am the only one who can keep her safe. The best my family and I can do to prevent her anguish from dominating every hour of her every day is to visit her several times a week and reassure her she is safe, and that so are we. I know she is in a safe place with a caring staff. That should be enough to ease my worries, but somehow it just doesn’t cut it. Mercifully, on this long and painful journey, Mom will eventually forget. We will not.
Sandra Sukhan is the eldest of four children and part of a very large extended family in Canada and Guyana. She is an ardent advocate for her family, as she detailed in “The Accidental Advocate” in our Spring issue last year.
Winnipeg writer Sandra Sukhan was born and raised in Guyana. She recently published a cookbook of some of her favourite recipes, including traditional Guyanese food. To order a copy of Comfort Food From Sandra’s Kitchen: Guyanese and Other Favourites, contact her at firstname.lastname@example.org or 204-488-2628.