Lindsay Bongard-Batori on losing her mom Barbara to Alzheimer's

Lindsay's mother Barbara had Alzheimer's disease. Lindsay, her brothers, and her father noticed changes in her mid-sixties. They started noticing her repeating herself and she stopped coming to the pool with them when they went to visit her and their dad in Florida. She also forgot where she parked her car and had to ask for help. Her memory was not what it used to be and she started to withdraw from social events.

Lindsay and her brothers decided they needed to talk to her doctor about these memory issues. They decided as a family that it was time to look into homes for her. They did not want to wait until it was an emergency and they had to put her into a home. They found a home that was dedicated to people with dementia and they were able to get her a room there. It was a very hard decision for Lindsay and her family. They had to depend on each other to take care of her. 

Lindsay visited her every day and she felt like she was doing this for herself as well. It was very hard for Lindsay to see her mother like this. She missed being able to call her and tell her about her life. She wished her mother could see her kids grow up and experience life without her.

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.

The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.

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Transcript

My name is Lindsey Bongard-Batori. I am connected to Alzheimer's because I had two grandparents who suffered through it and my mother who suffered through it, and two uncles who also dealt with Alzheimer's. So I'm very connected through lots of people in my family. My mom was my person, and I always use that term because nothing explains it better than that. I mean, even at a young age, I remember faking sick in grade one just because I wanted to be home with my mom. I would have done anything to be with her. I have two older brothers, so I think we were each other's people. I just always knew she was there for me. She was definitely my best friend. She was my safe place. And she was just that person always there in the background. She never interfered. She never caused trouble. I don't remember even as a teenager, not wanting to be with her. She was easy.

She was kind. She was soft. Being with her was special. And I don't take that for granted. My mom's name was Barbara. She was an avid reader, and I think she passed that down to me. She loved going for a walks and just appreciating the little things in life. She loved to travel. And I think if she could have done more of that, she would have. She was a stay at home mom. Her kids were her life. I don't know what she did, but my brothers, sometimes we'd fight over her and, you know, we're happy to be around her and relished being with her and to the point where our friends like to come over and hang out with her and loved her cooking. But again, she never pushed herself into our lives and kind of just thought she'd always be there with me, which she is in a different way. If anything, as a mother myself, that I could be a part of what she was to my kids.

I would say in her mid to late sixties, her and my dad moved to a condo. My older brothers and I were out and all living relatively close. My older brother lived in the States, though, you know, I'd always consider us a close knit family, even though we were, you know, have our arguments or whatnot. So I had kids first and she was very involved. We started to notice her repeating herself a lot. I don't even think it was forgetting things. It was more repeating what she had just said. And we started to get annoyed with that. My dad, my brothers and I, like we depend on you. What do you mean? You just said that? And then I remember feeling the sense of guilt. Like, why am I getting mad at her?

I noticed her slowly drawing back from us. For example, the first time my parents went to Florida and we would go visit. She wasn't coming to the pool with us or wasn't participating as much as previous. And I was like, “What are you doing? Why don't you want to be with us?” I would start to talk about it with my brothers and my dad and nobody else noticed it. We did just very here and there, sort of quietly to each other. It was odd for her. And then she started forgetting things. I remember one day she called me crying. She went to Loblaws and she couldn't find her car, and the parking lot wasn't even that big, but she was hysterical and she was scared. And I had to talk her down and had to talk her through it. And eventually she asked for help, which for my mom, who was a bit of a quieter person, wasn't the most proactive. So if she could figure it out herself, it was just easier and quieter and she didn't want to make a bigger deal about things, so she had to ask for help. That was hard and she was scared. And I think that was like her first realization of this task was a lot harder than we all expected. Another thing that came up was one year at a Passover dinner, there were some prayers and somebody said the prayers. And about 2 minutes later she said, okay, let's say the prayers. And we all kind of looked at each other like we just went we just did that.

It was then that we decided as a family with her involved that it was time to talk to your doctor about this memory issue. And she was obsessed with something called MCI, which is mild cognitive impairment. And we knew we knew we've been down this road before

with my dad's parents and my mom's father. That's when it sort of became real and it started to have an effect on my entire nuclear family, my brothers, my dad, my mom and myself of like, what's to come. And it was scary. It was almost painfully slow, this decline, because when we started talking openly about it to other people, everyone's like, “What are you talking about? She seems fine.” I would have to explain, “You don't know her like I do, and you don't see her every day.” And it was almost like we had to justify this, this decline I could see in her when we would go to social events. She was quieter. And I remember saying to her one day, “Mom, you were so quiet.” And she said, “I don't have anything to offer. And it's hard for me to join in a conversation.” And that hit me. I felt really sad for her because I knew she was uncomfortable and she started to not want to go out a lot. And that was hard for my dad, who was near retirement, and my father, who's very active and plays tennis three times a week and is very social and works out and likes to get out and do things.

She started to retreat more and want to stay home and lie down, and she was diagnosed with depression and she didn't like entertaining as much and kind of noticed she was reading books that she she'd read before and she would make jokes about it. She said to me, “Did you read 50 Shades of Grey?” And I said, “Yeah, Did you?” And she's like, “Yeah, I read it twice. You know, my memory is not so good.” And I was like, “Well, okay, Mom.” So she knew. She knew things were going down. And then eventually her license got taken away and that was a very hard blow. And I remember when that happened to my grandfather, she was very aware of how hard that was for him. So when that happened to her, she could see her independence was being taken away. And we tried as a family and my dad was still working. But we tried as a family to organize. You want to go out? I'll take you this day. Jeremy will take you that day. Dad's going to take off that day. And it just got complicated and hard. And Uber was not even a choice. She couldn't do that. So she was just staying home more and more. We weren't letting her do so much, like, take care of my kids or, you know, go out by herself. And she did go out by herself once and she fell and had to go to the hospital and get stitches. And it was really scary. And that's when we started to have the conversation of what's her next step like? What do we do? How long do we watch her decline before something really bad happens?

We started looking into homes for one day because I said to my dad, “I don't want it to get to the point where it's time to put her in a home because we can't care for her and there's nowhere for her to go or we don't know or it's an emergency.” Luckily for me, I have a friend who runs a home for people with Alzheimer's called One Kenton, and it's only devoted to people with dementia. And we knew that one day this is probably where she'll end up because we did hire somebody to come a few days a week and it wasn't enough. And my dad, he really tried. He tried with her medications. It just became too much. And he retired and he thought he was going to devote everything to her. That was his plan. And it just came to the point where her speech pretty much declined completely. And I remember her lying in bed one day, and I whispered to her and I said, “Mom, get it together, because if you don't, you're going to be going into a home. And I know you don't want that.” So please, like, I was like, begging her, don't do this. But obviously, you know, that was more my issue than her issue. She couldn't help it.

And a few weeks after we had seen the home and gone into the home and decided she got into a habit of going through her jewelry. Just quietly like this habit of sorting. My dad was in the other room and he heard her fall. And he ran into the hall and she had fallen. And he was hysterical finding her like that. And that's when we knew that this can't go on any more at home. Luckily, she got a room at One Kenton, probably three days later. That was the hardest part. I went over, I packed her up and we went over. My brother and my