Lewy Bodies is the disease that Robin Williams was diagnosed with just months before he committed suicide. But you might not have heard of it, besides that.
Most of what we hear about in the media dealing with problems of the mind and dementia surrounds Alzheimer’s Disease.
An estimated 5.4 million people in North America currently suffer from Alzheimer’s. And the disease actually kills more people each year than both breast and prostate cancer combined.
But Lewy Bodies also targets many individuals every year- an estimated 1.4 million-and a diagnosis can be equally devastating. As a disease that deprives victims of control over both their mind and body, dealing with it can be a special challenge- one that some, such as Williams, can barely face.
In order to shed more light on this incurable illness that still holds many mysteries for medical specialists, Ratemds spoke with Kristin Fitzpatrick, a freelance editor, wife and mom of Toronto, Canada and asked her to share her experiences dealing with the disease.
Fitzpatrick’s own mother has been living with the decline of Lewy Bodies for over 15 years.
Ratemds: Your mom has Lewy Bodies, a form of dementia. How is it different, in your experience, from what we hear in the media about Alzheimer’s?
Kristin: I’m not a scientist, but from what I know, Lewy Bodies affects the brain in a different way from Alzheimer’s.
Most people think that “dementia” means losing your memory, but for my mom, certainly early on, memory loss was not a symptom. For her, it was other things. She had much more trouble carrying out complex tasks step-by-step, or following the logic of someone else’s reasoning.
Ratemds: What were some early signs?
Kristin: Some early signs for us were when my mom was losing stuff-glasses, keys, the things we all misplace-but she was doing it every day, multiple times a day. And the things would turn up in odd places, like finding the keys in the freezer.
She would also get confused for a moment and drive on the wrong side of the road, or she would begin braking for a red light an entire block ahead.
Later on, she would look for her coffee cup and it would be on the table right in front of her. You would say, “Mom, your coffee’s here” but she still would have trouble seeing it.
Ratemds: What’s her memory like now?
Kristin: She’s now blind and she can’t really talk anymore, so it’s hard to know what she’s thinking, but it seems like at least some of her memory is there. If we start talking about her hometown or we mention people in the family, she perks up and sometimes smiles. Somehow it feels like she’s still in there, somewhere underneath it all.
Ratemds: Tell us a bit about your mom’s story.
Kristin: After graduating from university with honors, my mom worked for a number of years for polling firms and then obtained her master’s degree in library science before having kids.
Once my sister and I were born, she stayed home with us while my dad worked as a professor.
One of the characteristics of my mom that stands out in my mind was that she was really organized. “A place for everything and everything in its place,” she would say.
She sewed really well, complicated patterns that looked store-bought from someplace expensive.
And she had a mathematical mind. Occasionally she picked up work grading papers for university-level statistics classes.
Aside from this, she was the backbone of our family life. She made sure that everyone had clean clothes to wear and nutritious home-cooked food to eat, and that we all arrived where we were supposed to be when we needed to.
But in her late 40s she started getting overwhelmed with these kinds of routine tasks. It came on really gradually, and she would have good days and bad days. My dad, my sister, and I spent many years wondering if something was wrong. “She did this—did you notice?”
For her part, my mom probably wondered, too. No one really expected dementia at such a young age.
And so things happened gradually. By the end of high school, I was phoning home every day at noon to help her plan the family’s evening. She needed help figuring out who needed to be where when, and when should she serve dinner.
And then she was diagnosed. My younger sister and I came to her appointment. The doctors labeled her as having dementia when she was 59 and I was 25. The doctors assumed she had early on-set Alzheimer’s, and we were actually told she would be bedridden in 5 years and dead in 10.
That was 17 years ago.
Ratemds: How did you feel about the diagnosis when it came?
Kristin: I think it was something of a relief to our family to finally know there really was a problem- we were able to stop questioning ourselves. But it was also devastating, of course. At first the diagnosis was shocking. It didn’t seem real.
And I felt guilty about it. My mom had spent so many years taking care of the rest of us and not doing much for herself. Now she couldn’t do so many of the things she enjoyed. It felt like she had sacrificed herself for the rest of the family.
Ratemds: Tell me about some of the details. How did your family cope?
Kristin: After my mom was diagnosed, my dad retired and looked after her as she became more dependent. Things were really hard on my dad, because he was her husband and caregiver.
He had worked long hours for many years. I think he was looking forward to traveling with her and just spending more time together when he retired, but at that point he had to go right into caregiving mode.
He cooked, dressed her, eventually he helped her in the bathroom.
A major problem was that my mom moved around restlessly all the time, and she couldn’t seem to see her environment very well. She would constantly try to sit on chairs that weren’t there. You had to watch her all the time.
And at nighttime, she had trouble sleeping. She would get up to use the bathroom and become disoriented. My dad wasn’t getting much sleep either.
I have to say too that my mom also went through a period, just before she started to lose a lot of her self-care skills, when she was hallucinating. This was pretty tough.
Up until that point she had pretty much still seemed like the same person, just with limitations.
But then she started seeing things that weren’t there and imagining threats. It was really hard for my dad because a lot of the stuff she was imagining was negative things about him. She was scared and we needed to reassure her a lot. And it was scary for us, too. You couldn’t trust what she said anymore, and she’d always been a completely reliable person.
Eventually, she got some medication to help with the psychosis, but then her self-care skills really went downhill.
Finally, in 2006, a spot opened up for her at a long-term care facility near my parents’ home and it was time for us to make a decision. That was impossibly hard. She moved in and still lives there. She can’t walk anymore or talk much or feed herself, but she rests a lot. And she’s still there!
Ratemds: What is one of the hardest things about having a family member living with dementia?
Kristin: A lot of things are hard. Not ever having had a real adult-to-adult relationship with my mother is now the hardest. As I grew up, she regressed and now that I have kids, I think back to how my mom parented me and my sister. There are so many questions I have about why she made the choices she did. I wish I could ask her.
And I also know she would have been a very hands-on grandmother. I deeply regret the relationship she will never have with her grandchildren. My kids never knew the loving, patient, fun person that she was. They don’t like visiting her very much. It’s boring for them because they don’t have the memories I have.
To be frank, they mostly know her through my stories and explanations. I say that Mommo is sick, that she has a sickness in her brain that makes a lot of things hard for her, and that she wasn’t always like that. I say, we don’t know why she has it. You can’t catch it. Doctors don’t know how to fix it.
I try to talk about my memories of her, so that her spirit can be passed on to my kids even if they never really knew her.
Sometimes we will see someone else who is in a wheelchair, or seems to be experiencing some kind of mental health challenge, and if the kids ask, we will talk about how maybe they are kind of like Mommo. They understand this. I think this gives them more compassion, which is a good thing. So, maybe that’s a silver lining.
Ratemds: Can you conjecture what Robin Williams might have been feeling when he got his diagnosis of Lewy Bodies?
Kristin: Of course I don’t really know, but I would imagine that, obviously, he would have been feeling terrible. It must be devastating to learn that you have a progressive disease with no cure that will rob you of yourself and render you helpless.
Also, Robin Williams had a huge public persona. The prospect of losing your identity when so much of what you do hinges on it must have been extremely daunting.
Ratemds: Do you live your life differently now?
Kristin: Now? Now I think about how I should do things in the moment, because you never know how long you have. I also worry about having something similar happen to me, and wonder how I would deal with it.
Ratemds: How do you talk with friends and family about your mom’s disease?
Kristin: Everyone deals with loss differently. There are different stages, I think. For me, for a long time after I’d come to accept my mom’s condition, friends and relatives would still be at the hoping stage- hoping that something would be a cure, or would somehow help her.
They’d be wanting to talk about possible therapies or expressing shock at her decline.
To be honest, sometimes it was hard to be supportive of each other’s processes. And for a long time, I was one of the only people in my circle who had a parent who was sick. We were too young. So, I felt alone.
Nowadays it’s just one of those things that comes up casually in conversation. I’m 42 now and so more people I know are starting to experience the same losses. It’s one of those things that, when it’s first happening to you, it can seem unreal. But later, when you see someone else going through it, you can really identify with them.
It’s a journey that is life-changing.