August 2, 2016
"I wish I had cancer, I wouldn't feel so ashamed. When people have cancer, they wear pink ribbons for you, and go on long walks and raise money and you don't have to feel like some kind of social...I can't remember the word." - Julianne Moore's character in Still Alice, on the struggles dealing with early onset Alzheimer's.
I'll never forget the phone call. After passing through the Warsaw airport security with Jay and Zosia, I picked up my phone and noticed several missed calls from my dad. My brother had also left a Facebook message asking me to call back. It was odd that they both needed to talk to me so urgently. We were on our way to Georgia (the country) to meet some friends, and while Jay and Z (not the rapper) were gathering their things, I called my dad. His tone was calm but concerned, sad, but matter-of-fact. He took a deep breath and delivered the news. My mom had passed away that morning.
It's been a few months since it happened, but a wave of emotion grabs me every time I think about that phone call. And on every trip back to the airport since that day, my eyes involuntarily fill with tears. I can only imagine what will happen this week when I go back to the airport on my way to Hawaii. It's going to be strange there without her. It's still not quite real to me. I miss her every day; in my mind she is still back home in Seattle, sitting on her favorite chair, playing games on her iPad, or staring out the window towards Mount Rainier. I feel guilty that I'm thousands of miles away, but my dad and brother are back home, living with a reality in which they see her favorite chair, sitting empty every day.
I can't pretend to understand everything about dementia...in fact probably nobody does. I guess there are many different brain diseases which are considered a type of dementia (like Alzheimer's, which Julianne Moore's character dealt with). My dad's mom also suffered from dementia for several years before her death just a couple years ago. There's a difference between becoming forgetful as you age and being diagnosed with a physically deteriorating mental illness. I can't really say it's funny anymore to see an old person get senile and lose their bearings (though sometimes you can't help but make light of the situation)...it could be harmless, but could also be a sign of something really bad to come.
I had been living in Poland ever since my mom was diagnosed, so I didn't notice how things changed day to day, but it seems she was "slowing down" for the past several years. Doctors were giving her medication and supplements, she was doing brain exercises and trying to stay active, but it wasn't working. She stopped going to yoga, didn't feel like cooking, and for the lack of a better word, started getting lazy in that she didn't want to do things that she used to.
In the November 2014, less than 2 years before her death, she started having toilet accidents. I obviously don't mention this with the intent of embarrassing her; I mention it so people know the reality of what she, and many others, live with, in their final precious years (or months, or weeks). Jokes about peeing in one's pants have always been part of our culture; I personally love toilet humor. But I guess these jokes go through phases from when they're not funny (when you're a kid and you're the one peeing in your pants), to being funny (when you're an adult and can say "I haven't done that since I was a kid"), to not funny again (when it's a reality you have to live with for the rest of your life). She knew the accidents were happening, but couldn't stop it. Of course she was embarrassed, but after a while, she just laughed when it happened...like "oh well, there's nothing I can do". Dad had to make adjustments to how he cared for her. Simply put, she was becoming a child again.
She started moving slower, her conversation was limited to short questions and one-word answers. But she seemed to still understand my jokes, since she laughed a lot (and of course they were super funny). This was probably the most noticeable thing for me; she was always in a good mood. Even with all the internal struggles she was dealing with, especially in the early stages when she was depressed and struggling to accept the situation, she was always smiling. She was pleasant, obedient and affectionate. As it got worse, we had to tell her everything she was supposed to do: take your pill, put on your pajamas, swallow your food. But one thing she didn't need help with was showing affection. She held my hand more than she ever did before, and dad said that she'd wake him up in the middle of the night, playing with his mustache, touching his face and just staring at him. She couldn't say it, but we knew how much she loved us.
The other thing that was a constant was my dad's love for her. He was by her side every moment of the day. He literally couldn't leave her alone, because she might choke on her food, or wander out of the house. One night in Hawaii she got out of bed, took a shower, put on her shoes, went outside and started walking towards the car. Luckily we were awake and stopped her. Dad cooked for her and fed her, took her for walks, gave her puzzles and coloring books to keep her mind working, arranged countless doctor's visits, and cared for her every waking minute of the day. He didn't ask for any help; he actually seemed to shelter us a bit, like he didn't want us to see her in this condition. When her condition started to worsen, he wouldn't let me talk to her on Skype for more than a minute, because she wasn't able to say much back to me. It must have been tough for both of them to go to public places, like a shop or restaurant, when people tried to talk to mom, but dad would have to intervene. He did this not only to avoid an awkward feeling for the waiter, when mom would seemingly ignore him or her when they asked for her order, but also so mom wouldn't feel helpless; knowing there was an interaction going on, but being unable to respond. This must have been very frustrating for her, so dad simply started ordering food for her.
I think this is what Julianne Moore was talking about in the movie - that rather than receiving an out-pour of empathy from others, those suffering from dementia can often feel like social outcasts. They aren't able to interact with us the way we would expect them to. Think about the last time a stranger responded to an interaction with you in a way that you didn't expect: maybe they didn't respond when you asked for directions on the bus, avoided eye contact when you made small talk on the elevator, or simply walked past you when you stopped them on the street to ask where they got their scarf...we tend to get frustrated and assume that they are rude or that something is "wrong" with them. On the other hand, if the person had a visible disability, maybe we'd understand their reaction (or lack thereof). But when the disease is invisible, we tend to label them negatively, and unfairly. This was happening to mom on a regular basis, because she looked "normal". Dad never complained, he never asked for help, and he always kept a smile on his face, no matter how heartbroken he was. And I'm sure it was exponentially difficult for him since his mom went through the same thing. We're lucky to have him.
I kept some random notes of the signs mom showed in her decline, which I'd like to share here. The only thing I can say is to cherish every moment you have with your loved ones, because you never know when it'll be gone.
- She asked me if I knew that our dog Lani died (which was like 10 years before). It reminded me of when my grandma was visiting and she spent 10 minutes telling me a story about my dad when he was a kid, then finished the story by telling me that we were in his house and that I should meet him.
- I hadn't heard her say more than "yes" and "no" for several days, but there was a time when she spent 20 minutes sitting next to me staring at her toes, then asked me "do your toes bend sideways like this?" It was a silly question, but the fact that she was able to process a thought and ask a question made me very happy.
- When pressed, she could recite her siblings' middle names.
- When we would do something on the computer, she would often stand close and just stare at the screen, waiting for something to happen.
- She would sometimes shovel food in her mouth super quickly, but wouldn't swallow what was already there. Once my uncle had to perform the heimlich maneuver because she was choking. We realized we had to watch her when she eats.
- It was really hard to tell friends about it...and then it was awkward because people didn't know how to interact with her. They wanted to be polite, but after being used to a very social Cheryl before the disease, mom wouldn't interact with them. She did seem to understand when you talked to her...she just wasn't able to respond.
- When I gave her my hand to help her out of the car, she started to thumb wrestle me instead of getting out of the car, giggling, and trying really hard to win. This happened multiple times and was the highlight of the day.
- She would sit in the passenger seat of the car, but with half of her butt hanging over the edge of the seat so the door couldn't close. When we tried to scoot her over, she would just laugh and not move.
- Once she was doing exercises with dad and I went to the fridge to get a yogurt. She was completely distracted by the yogurt and wouldn't take her eyes off of it, ignoring dad's requests to complete the exercises. It was really sweet, like a child who wanted a treat.
- At Costco, we weren't paying attention at the checkout line and next thing we know, she was standing on the cashier's side of the counter, hands held behind her back, as if she was supervising the transaction.
- I really liked it when she held my arm while walking. We had to basically drag her to make her move at a decent pace, but it was comforting that she was holding on.
- And the true sign that I knew she is my mom is that she always laughed when I'd fart. This is proof that farting IS funny. When Scooter and I were kids, she never used to laugh at farts, trying to be all serious. But now I know that she really wanted to.
I will remember her for being adventurous (she had a tattoo before I did, and we went ziplining together), friendly (she treated all my friends so well), funny (she was always goofing around, especially when playing tricks on me on April Fool's Day), and for teaching a lot of life lessons. I still remember when she went "on strike" from taking care of us at home because we didn't appreciate her and didn't do our chores...and ever since that day, I always (ok, mostly) listened to her.
When I flew back for the funeral, my dad, brother, and I spent some time grieving with my aunt (who lost her husband a year earlier) at her place in Mosier, Oregon. It was nice to get out into nature, hiking near Mount Hood and the nearby lakes, just to reflect on things. The funeral itself was filled with both smiles and tears, and it was very touching to see so many family and friends that we hadn't seen in a long time.
We were so lucky to have all the support from friends and family, from all over the world. It was comforting to cry in each other's arms. When I think about all the aunties at the service, when they first approached me, looked at me with disbelief and a crushing sadness, and embraced for a good cry, I still get goosebumps. I'm so grateful for their love. The "public" comments on her online obituary, from people that I don't even know, is also much appreciated. They had a lot of nice things to say.
Before I went back to Warsaw, dad gave me a letter that mom wrote to me, years before, "in case something happens" to her. It was a very powerful and surreal moment. I had never cried so instantaneously as I did then. I was actually in a good mood before he told me what it was, and within half of a second, I found myself face down in my bed, pillow soaked in tears. I still haven't been able to open the letter. I feel like reading it will be her final goodbye, and I just don't want that to happen.
Damn, I miss her.
"I wish I had cancer, I wouldn't feel so ashamed. When people have cancer, they wear pink ribbons for you, and go on long walks and raise money and you don't have to feel like some kind of social...I can't remember the word." - Julianne Moore's character in Still Alice, on the struggles dealing with early onset Alzheimer's.
I'll never forget the phone call. After passing through the Warsaw airport security with Jay and Zosia, I picked up my phone and noticed several missed calls from my dad. My brother had also left a Facebook message asking me to call back. It was odd that they both needed to talk to me so urgently. We were on our way to Georgia (the country) to meet some friends, and while Jay and Z (not the rapper) were gathering their things, I called my dad. His tone was calm but concerned, sad, but matter-of-fact. He took a deep breath and delivered the news. My mom had passed away that morning.
July 7, 1948 - August 2, 2016
It's been a few months since it happened, but a wave of emotion grabs me every time I think about that phone call. And on every trip back to the airport since that day, my eyes involuntarily fill with tears. I can only imagine what will happen this week when I go back to the airport on my way to Hawaii. It's going to be strange there without her. It's still not quite real to me. I miss her every day; in my mind she is still back home in Seattle, sitting on her favorite chair, playing games on her iPad, or staring out the window towards Mount Rainier. I feel guilty that I'm thousands of miles away, but my dad and brother are back home, living with a reality in which they see her favorite chair, sitting empty every day.
Haleakala, Maui
I can't pretend to understand everything about dementia...in fact probably nobody does. I guess there are many different brain diseases which are considered a type of dementia (like Alzheimer's, which Julianne Moore's character dealt with). My dad's mom also suffered from dementia for several years before her death just a couple years ago. There's a difference between becoming forgetful as you age and being diagnosed with a physically deteriorating mental illness. I can't really say it's funny anymore to see an old person get senile and lose their bearings (though sometimes you can't help but make light of the situation)...it could be harmless, but could also be a sign of something really bad to come.
I had been living in Poland ever since my mom was diagnosed, so I didn't notice how things changed day to day, but it seems she was "slowing down" for the past several years. Doctors were giving her medication and supplements, she was doing brain exercises and trying to stay active, but it wasn't working. She stopped going to yoga, didn't feel like cooking, and for the lack of a better word, started getting lazy in that she didn't want to do things that she used to.
Mom and Dad in Poland, 2011
Rafting in the Grand Canyon, 2010
In the November 2014, less than 2 years before her death, she started having toilet accidents. I obviously don't mention this with the intent of embarrassing her; I mention it so people know the reality of what she, and many others, live with, in their final precious years (or months, or weeks). Jokes about peeing in one's pants have always been part of our culture; I personally love toilet humor. But I guess these jokes go through phases from when they're not funny (when you're a kid and you're the one peeing in your pants), to being funny (when you're an adult and can say "I haven't done that since I was a kid"), to not funny again (when it's a reality you have to live with for the rest of your life). She knew the accidents were happening, but couldn't stop it. Of course she was embarrassed, but after a while, she just laughed when it happened...like "oh well, there's nothing I can do". Dad had to make adjustments to how he cared for her. Simply put, she was becoming a child again.
She started moving slower, her conversation was limited to short questions and one-word answers. But she seemed to still understand my jokes, since she laughed a lot (and of course they were super funny). This was probably the most noticeable thing for me; she was always in a good mood. Even with all the internal struggles she was dealing with, especially in the early stages when she was depressed and struggling to accept the situation, she was always smiling. She was pleasant, obedient and affectionate. As it got worse, we had to tell her everything she was supposed to do: take your pill, put on your pajamas, swallow your food. But one thing she didn't need help with was showing affection. She held my hand more than she ever did before, and dad said that she'd wake him up in the middle of the night, playing with his mustache, touching his face and just staring at him. She couldn't say it, but we knew how much she loved us.
Mom, Lani and Scooter a long time ago
The other thing that was a constant was my dad's love for her. He was by her side every moment of the day. He literally couldn't leave her alone, because she might choke on her food, or wander out of the house. One night in Hawaii she got out of bed, took a shower, put on her shoes, went outside and started walking towards the car. Luckily we were awake and stopped her. Dad cooked for her and fed her, took her for walks, gave her puzzles and coloring books to keep her mind working, arranged countless doctor's visits, and cared for her every waking minute of the day. He didn't ask for any help; he actually seemed to shelter us a bit, like he didn't want us to see her in this condition. When her condition started to worsen, he wouldn't let me talk to her on Skype for more than a minute, because she wasn't able to say much back to me. It must have been tough for both of them to go to public places, like a shop or restaurant, when people tried to talk to mom, but dad would have to intervene. He did this not only to avoid an awkward feeling for the waiter, when mom would seemingly ignore him or her when they asked for her order, but also so mom wouldn't feel helpless; knowing there was an interaction going on, but being unable to respond. This must have been very frustrating for her, so dad simply started ordering food for her.
I think this is what Julianne Moore was talking about in the movie - that rather than receiving an out-pour of empathy from others, those suffering from dementia can often feel like social outcasts. They aren't able to interact with us the way we would expect them to. Think about the last time a stranger responded to an interaction with you in a way that you didn't expect: maybe they didn't respond when you asked for directions on the bus, avoided eye contact when you made small talk on the elevator, or simply walked past you when you stopped them on the street to ask where they got their scarf...we tend to get frustrated and assume that they are rude or that something is "wrong" with them. On the other hand, if the person had a visible disability, maybe we'd understand their reaction (or lack thereof). But when the disease is invisible, we tend to label them negatively, and unfairly. This was happening to mom on a regular basis, because she looked "normal". Dad never complained, he never asked for help, and he always kept a smile on his face, no matter how heartbroken he was. And I'm sure it was exponentially difficult for him since his mom went through the same thing. We're lucky to have him.
January 2016
Mom in Mount Rushmore
I kept some random notes of the signs mom showed in her decline, which I'd like to share here. The only thing I can say is to cherish every moment you have with your loved ones, because you never know when it'll be gone.
- She asked me if I knew that our dog Lani died (which was like 10 years before). It reminded me of when my grandma was visiting and she spent 10 minutes telling me a story about my dad when he was a kid, then finished the story by telling me that we were in his house and that I should meet him.
- I hadn't heard her say more than "yes" and "no" for several days, but there was a time when she spent 20 minutes sitting next to me staring at her toes, then asked me "do your toes bend sideways like this?" It was a silly question, but the fact that she was able to process a thought and ask a question made me very happy.
- When pressed, she could recite her siblings' middle names.
- When we would do something on the computer, she would often stand close and just stare at the screen, waiting for something to happen.
- She would sometimes shovel food in her mouth super quickly, but wouldn't swallow what was already there. Once my uncle had to perform the heimlich maneuver because she was choking. We realized we had to watch her when she eats.
- It was really hard to tell friends about it...and then it was awkward because people didn't know how to interact with her. They wanted to be polite, but after being used to a very social Cheryl before the disease, mom wouldn't interact with them. She did seem to understand when you talked to her...she just wasn't able to respond.
- When I gave her my hand to help her out of the car, she started to thumb wrestle me instead of getting out of the car, giggling, and trying really hard to win. This happened multiple times and was the highlight of the day.
- She would sit in the passenger seat of the car, but with half of her butt hanging over the edge of the seat so the door couldn't close. When we tried to scoot her over, she would just laugh and not move.
- Once she was doing exercises with dad and I went to the fridge to get a yogurt. She was completely distracted by the yogurt and wouldn't take her eyes off of it, ignoring dad's requests to complete the exercises. It was really sweet, like a child who wanted a treat.
- At Costco, we weren't paying attention at the checkout line and next thing we know, she was standing on the cashier's side of the counter, hands held behind her back, as if she was supervising the transaction.
- I really liked it when she held my arm while walking. We had to basically drag her to make her move at a decent pace, but it was comforting that she was holding on.
- And the true sign that I knew she is my mom is that she always laughed when I'd fart. This is proof that farting IS funny. When Scooter and I were kids, she never used to laugh at farts, trying to be all serious. But now I know that she really wanted to.
I will remember her for being adventurous (she had a tattoo before I did, and we went ziplining together), friendly (she treated all my friends so well), funny (she was always goofing around, especially when playing tricks on me on April Fool's Day), and for teaching a lot of life lessons. I still remember when she went "on strike" from taking care of us at home because we didn't appreciate her and didn't do our chores...and ever since that day, I always (ok, mostly) listened to her.
Ziplining in her 60's!
My jumping picture inspiration
When I flew back for the funeral, my dad, brother, and I spent some time grieving with my aunt (who lost her husband a year earlier) at her place in Mosier, Oregon. It was nice to get out into nature, hiking near Mount Hood and the nearby lakes, just to reflect on things. The funeral itself was filled with both smiles and tears, and it was very touching to see so many family and friends that we hadn't seen in a long time.
We were so lucky to have all the support from friends and family, from all over the world. It was comforting to cry in each other's arms. When I think about all the aunties at the service, when they first approached me, looked at me with disbelief and a crushing sadness, and embraced for a good cry, I still get goosebumps. I'm so grateful for their love. The "public" comments on her online obituary, from people that I don't even know, is also much appreciated. They had a lot of nice things to say.
Hiking Mount Hood with mom on our minds
Mom's service/celebration
Rest in Peace, Mommy
Before I went back to Warsaw, dad gave me a letter that mom wrote to me, years before, "in case something happens" to her. It was a very powerful and surreal moment. I had never cried so instantaneously as I did then. I was actually in a good mood before he told me what it was, and within half of a second, I found myself face down in my bed, pillow soaked in tears. I still haven't been able to open the letter. I feel like reading it will be her final goodbye, and I just don't want that to happen.
Damn, I miss her.
