By Katie Kelly
The first time that I noticed something was wrong with my dad was when he started forgetting the names of family members.
My mother noticed it when my dad started mumbling things about missing deliveries and repeating odd things.
My sister Kim first noticed something was off when our dad started bringing memories up from years ago.
My father, Chet Shimko, was diagnosed with Lewy Body Dementia on Aug. 29, 2018.
He’s currently in the early stages, but it could progress at any point. No one is sure when it could get extreme or if it will stay this way for the next few months
“It’s heartbreaking, like he has such a great personality. He’s a great guy, he’s such a good dad. He’s always there for us, and one day he won’t be,” sister Celeste, one of six kids, explained.
According to the Alzheimer’s Association, Lewy Body Dementia is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time. The diagnosis for it is “clinical,” meaning it is the doctor’s best professional judgment about the reason for a person’s symptoms.
It affects 1.4 million people in America.
“The hallmark brain abnormalities linked to Lewy Body Dementia are alpha-synuclein protein, the chief component of Lewy bodies, found widely in the brain, but its normal function isn’t yet known,” Sara Murphy, the Vice President of Services and Programs at the Alzheimer’s Association explained.
There are no treatments or cures.
“Current strategies focus on helping symptoms,” said Murphy.
Lewy Body, My Dad and Me
Growing up, my dad pretended to not remember who was who by calling me and my siblings different names. I was the only one left at home, all of my other siblings grown with families of their own, so when he started to call me by one of their names seriously, I started to get concerned.
He suddenly couldn’t remember things in threes. If there was a list of three names, the third one he’d forget. If there were three things he was supposed to get from the grocery store, he couldn’t remember the last thing. It was odd to me that he suddenly couldn’t remember simple things.
Another thing I had noticed around this time was he was confused on how to get places. He would try to play it off as a joke, but I’m not sure it ever was.
He worked as a delivery driver at a pharmacy for five years and would be on the way to make a delivery and forget where he was going or what he was doing. He’d make a lot of stops home, instead of delivering the medicines and would often make my mother go with him to make sure he’d get where he was going.
He loved to get out of the house and go for walks and drives, but now if I were to ask him if he wanted to come for coffee, he’d say no. He wants to stay in the house and read a book where he knows his surroundings.
My dad also stopped greeting friends and family with a loud and warm welcome. Normally, he’d yell and ask them what the hell they were doing in his house and why they didn’t ever stay home. But it suddenly stopped, and is now replaced with a small wave and a smile.
He likes to repeat things to himself and out loud to everyone. We could be sitting together in the living room and he’ll be reading the newspaper to himself, but he might read the headline or a sentence from the article to everyone in the room. And he’ll say it a few times, even though we all heard him the first time. Or, sometimes when my mom or I will tell him something that happened or what time we’re going somewhere, he’ll repeat it in a song-like way. But an hour later he won’t remember what he had been talking about.
Since I’m not home often and don’t get to see him much, it’s bothered me that he’s lost his concept of time. He’s confused about what time of day it is or what day it is, and he’ll ask what time it is even though there’s a clock near him.
He normally goes to physical therapy on Tuesdays and Thursdays and when I was home for Spring Break on a Friday, he asked me to take him to his therapy session and then we could go for a drive. And then it was like every day after that, no matter how many times I told him what day it was, it was like he couldn’t remember.
My favorite memory with my dad is watching the show “Married with Children” before leaving for school. He’d always have it on, playing in the background while he read the paper or did his crosswords in the morning.
The Diagnosis and My Dad
My mother realized something was off when he would bring up his work at Suburban Propane, where he worked as a truck driver 15 years ago.
She also noticed he would get confused about what day it is and what time it was, and sometimes he would say things that didn’t make sense about people that weren’t alive anymore, like his mother.
One Sunday night, my mother, two of my sisters and I sat around our kitchen table and watched as my eldest sister, Kim, who is a nurse, decided to give him a dementia test. He passed with flying colors. It was a basic test that asked for the year, the president, how to make a 3-D box. But Kim suggested an appointment with a neurologist, just to make sure.
It would be a few months, before his first appointment on July 31, 2018 with Dr. Lichtenstein and then his first brain scan on Aug. 29, 2018.
The diagnosis would be Lewy Body Dementia.
All of the symptoms matched my father’s plight. There were signs that we had all seen up to this point: increased memory loss, difficulty sleeping, increased social withdrawal, seeing things that aren’t there and movement disorders. But without the test results, we wouldn’t have known exactly what it was.
On December 5, my father went back for more tests, and a different doctor found that he had depression and other issues. It was found that he had no interest in doing anything which was linked to the depression.
The most recent test in March with Dr. Lichtenstein showed a slight progression, but nothing more.
The doctors can’t pinpoint exactly a time frame for when it will get worse. It could be days, months, even years before we see a drastic change. There isn’t enough known about Lewy Body Dementia to determine that factor. My dad thinks that there’s nothing wrong with him and that one day he’ll get better. He knows that he has Lewy Body, but says he feels great.
Lewy Body, My Dad and My Mom
My mom, Kathy, is my father’s primary caregiver. She’s with him almost 24/7.
She says his symptoms are worse in the evening and at night. He feels afraid and can sleep but dreams seem real and he might act them out but he night not.
“At night, because Chet insists he still works at Suburban, he has gotten up and dressed to go and said he needs to fill tanks because he installed a heater and people need heat,” Kathy said.
There are days he insists that he still works there, and others he believes he’s only been retired for two years. He is also convinced he works at Family Pharmacy, but hasn’t worked there since November 2017.
Kathy also explained that he asks to see me sometimes, and thought we only lived an hour away, when really, it’s a four-hour trip. And he told her that he wasn’t sure that his late mother could make it. He’s constantly wanting to go for a drive to see the other kids and grandkids but we have to take the keys off of him, because we’re worried where he might end up or what might happen.
He has hallucinations, mostly at night, some more vivid than the others, which both my mother and I have encountered.
“There was one night he saw a man on the side of the bed and was yelling at us to get his gun. He hasn’t had a hunting gun in I don’t know how many years,” she said.
There was one night after an incident where he thought he saw a man under the bed and wanted to shoot him. There was no one there, but he refused to go to sleep until my mother and I both checked. He swore we were playing a trick on him and was convinced he was having a stroke and he wrote a note and had it in his pocket: “call my wife 655-4634 and call 911 having a stroke stroke.”
It was the wrong number and the writing was almost illegible.
He also tends to have trouble remembering which room is which, and can’t remember when we moved into the house. We’ve lived here since the early ‘90s and purchased it in ’96 or ’97.
“It’s been very hard seeing the changes in him and knowing it will only get worse,” Kathy explained.
My mom explained that it’s difficult being the only two in the house a lot of the time, because he’s afraid to leave and she doesn’t want to leave him alone.
“He always did crossword puzzles, and now he asks for the easy answers or just tells me they’re hard to answer,” she said.
Lewy Body, My Dad and Kim
My older sister Kim started noticing my dad’s dementia when he would say things little things about his mom or someone from his childhood that’s been deceased for a while or that he hasn’t talked about in years.
“Just certain things he would say like, the other day his mom did this, and I would be like the other day?” Kim explained.
She had gone back to school to study nursing, so she had an inkling of what was going on. When Kathy called her, and started to tell her the little things she was picking up on, she brought up a dementia test. She printed one out from work and brought it over one night.
“We watched him make that box at the kitchen table. He passed the test but we still wanted him to go to neurology.”
Kim explained that when he’s at the doctor’s office for an appointment, he’s like a little kid. The doctor will direct the questions at him and he won’t answer them, he’ll usually look to her or my mother for an answer. It’s like he doesn’t know what the doctor is asking or doesn’t want to answer them. He acts like nothing is wrong most of the time.
The thing that bothers Kim the most is that he isn’t going to remember who she is.
“There’s times when I know he’s doesn’t know who I am, but he knows I’m someone that he knows but he doesn’t say my name. And I feel like he doesn’t recognize me,” Kim said.
Our dad is also a little iffy on her boyfriend, Mike. Sometimes he’ll say hello to him and say his name other times he won’t even look at him. Mike laughs it off, and always says hello to him, taking it in stride.
In the past, he’d always be up to go and visit everyone, bouncing around from house to house or going to for lunch or dinner with someone, but now he doesn’t really go anywhere. She’s noticed he doesn’t like to leave his familiar surroundings, she’ll call to take him somewhere or do something and he’ll say no maybe tomorrow. He feels like he always has to be on alert, like someone or something is going to attack.
The other night when they were all together for dinner they were talking about things that happened when they were younger and he was so happy just talking about things. He was talking about some of the trouble that each of them had gotten into and how he always found out what they were doing. And he was laughing at the stories they were telling. He just kept saying do you remember when this happened and when you did this and when Jamie did this?
He also keeps bringing up his brother Joe, who passed away two years ago, he keeps saying it happened a few days ago. Everyone keeps correcting him. But he keeps saying I can’t believe it was just a couple days ago.
“For me as the oldest, now to see how he’s progressing. I was the closest to my dad growing up. Even when I got pregnant with Sammy, I told my dad I was pregnant before my mom.”
Lewy Body, My Dad and Celeste
Celeste, my sister, noticed something was off when he started to talk about things that happened a really long time ago. He sometimes mentions things that happened when he was a kid or things with his mother. He would come over to her house every morning to help take her three daughters to school while she was getting ready for work.
“He would talk about things that happened when he was a kid and then stuff about Grandma Shimko and I’d be like what dad?” Celeste said.
He would be the loudest one singing Happy Birthday at any party, always there to put his two cents in or yell about cutting the cake wrong. And he was constantly asking about when any of Celeste’s girls or any of his grandchildren had sports because growing up, he had been the coach for Celeste, Kim and Theresa’s softball team and a part of the swim association. He was always involved in everyone’s lives in one way or another.
One Friday, Celeste spent the day with him, going to a few places and then made dinner at her house. She said he was really nervous the entire time about everything. He was nervous about any little thing: leaving the house and the time, and going out to eat. And when they went out for lunch she had to cut his meat for him which was hard for her because it’s like the roles are reversed now.
“It’s heartbreaking. He has such a great personality, he overshined everyone at birthday parties, he was the life of the party. And now he’s like a different person,” she said.
She also touched on how he sometimes forgets her eldest daughter, Gabriella’s name. But she thinks it’s because when Gab was little they lived in Jersey so he wasn’t around her as much and didn’t spend as much time as he did with Sofia and Julianna. It still upsets her when he names them and says “Julianna, Sofia and the other one.”
She also doesn’t like calling him on the phone because he gets confused and doesn’t know who she is by the sound of her voice. He’ll just call her C. Gonzales which is what comes up on the television screen. Not Celeste, C. It upsets her, because before he would know it was her, and now it’s like he doesn’t really know until she starts talking or says “dad it’s me, Celeste.”
He also keeps asking why she thinks there’s something wrong with him, why everything is wrong with him. She keeps telling him something is wrong and that he’s forgetting her.
“I remember one time when I was 12 or 13, I wanted a blue pair of sandals with this heel and my mom said no, but dad went out and bought them. That’s just how he was.”
He used to come home in the Suburban Propane truck and take them for rides, and now we don’t know when he’s not going to know who anyone is.
“I have friends who have been through this and I know what’s going to happen and it’s heartbreaking.”
Lewy Body and My Dad
My brother Chet and sister Theresa didn’t comment on the story, as one is away on work and doesn’t discuss the topic with anyone and the other didn’t get back to me in time of publication. And Jamie didn’t seem to want to talk to me when I reached out.
I’m not sure why but this is a difficult subject and I knew from the beginning that it was going to be difficult to get everyone on board and to get people to talk to me. We are all close with our dad, some more than others, and it is very difficult for us to discuss this topic.
My only goals through writing this are to show everyone what my father is currently going through and the effects of Lewy Body Dementia on the body and brain. My dad is the heart of the family and it’s been extremely difficult for all of us to deal with this separately and together. I wanted to share his story and some memories.
My dad doesn’t really know what’s going on, he does but he doesn’t like to talk about it. He says, “It sucks that one day I feel good and one day I don’t.”
He just recently told his younger brother Lenny because he really doesn’t feel like anything is wrong with him.
He doesn’t feel like he has full dementia but he does feel like every issue he’s ever had is coming back, like his back issues and shoulder issues.
“I’m afraid of forgetting people altogether. But as far as I’m concerned, I’m doing fine.”