Unraveling the Maze: Parkinson's vs. Dementia (One Man's Journey & Caring for Mom)
Living with Parkinson's? Wondering about the differences between Parkinson's and Dementia? This episode of Live Parkinson's Live and Exceptional Life tackles both!
Join your host, Chris Kustanbauter, as he breaks down the key differences between Parkinson's and Dementia. Learn about the symptoms, causes, and how to navigate these conditions.
But this episode is more than just information. [Your Name] shares his own personal story, offering a glimpse into a Day in the Life of Living with Parkinson's. Then, he sheds light on the challenges and rewards of caring for a loved one with Dementia, sharing a Day in the Life of Dementia from his perspective as he cares for his Mom.
This episode is for you if:
You or someone you know has been diagnosed with Parkinson's.
You're concerned about the difference between Parkinson's and Dementia.
You're a caregiver for someone with Dementia.
Gain valuable insights, find support, and discover how to live a fulfilling life despite challenges.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Unraveling the Maze: Parkinson's vs. Dementia (One Man's Journey & Caring for Mom)
Living with Parkinson's? Wondering about the differences between Parkinson's and Dementia? This episode of Live Parkinson's Live and Exceptional Life tackles both!
Join your host, Chris Kustanbauter, as he breaks down the key differences between Parkinson's and Dementia. Learn about the symptoms, causes, and how to navigate these conditions.
But this episode is more than just information. [Your Name] shares his own personal story, offering a glimpse into a Day in the Life of Living with Parkinson's. Then, he sheds light on the challenges and rewards of caring for a loved one with Dementia, sharing a Day in the Life of Dementia from his perspective as he cares for his Mom.
This episode is for you if:
You or someone you know has been diagnosed with Parkinson's.
You're concerned about the difference between Parkinson's and Dementia.
You're a caregiver for someone with Dementia.
Gain valuable insights, find support, and discover how to live a fulfilling life despite challenges.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Hello and welcome to Live Parkinson's Live an Exceptional Life. I'm your Chris, Kustanbauter, and I've been living an exceptional life with Parkinson's for the past 14 years. The mission of this podcast is to help as many people living with Parkinson's as possible live a great quality of life. Now today's topic is Parkinson's versus dementia my personal journey, living with both and caring for my mom. Now, before we get started, I have a brief disclosure, and that is I am not a medical professional. The experiences and information shared in this episode are based on my own personal experiences living with Parkinson's and being involved in the care for my mom, who has dementia. Definitions and information are from research experts in the field of Parkinson's and dementia and are based on validated science. Please consult your health care provider for specific questions or issues relating to Parkinson's and dementia. Now, for 14 years, tremors, stiffness and balance problems have been my morning greeting, but for 18 years, I've watched my mom disappear piece by piece. Join me as I navigate the world of Parkinson's and dementia as a patient and a son. This episode is designed to be educational and informative, but is done through the lens of the story of my personal journey living with Parkinson's and helping to care for my mom living with dementia. I'll share struggles, challenges, funny stories, successes and, ultimately, hope to help you live with hope and determination so you're able to live a great quality of life, with hope and determination, so you're able to live a great quality of life. My hope is that you can learn from my story and apply it to helping improve your life or the life of someone you care for. I want you to understand that you're not alone. If your life is impacted by these two devastating diseases, there is help, resources and support available to you. Now here's how the podcast will be laid out. First, I'll spend some time discussing both conditions Parkinson's and dementia and my personal experience with both, including some common misconceptions with both diseases. Then I'll transition into a section on living with the differences, where I'll discuss a day in the life of Parkinson's and a day in the life of dementia through living with watching my mom. I'll discuss some of the communication challenges with both diseases, mom. I'll discuss some of the communication challenges with both diseases and I'll share some of the similarities and differences from a personal perspective. Then, finally, I'll share my story of living with hope and happiness, and how you can too. So if you're ready, let's open the book and learn more about the story of living in two worlds with gratitude and resilience. So let's start out by looking at the differences between Parkinson's and dementia.
Chris Kustanbauter:
Parkinson's is a chronic, progressive movement disorder that affects the nervous system. Symptoms of Parkinson's disease include tremors, stiffness, which is a feeling of rigidity in the arms, legs and trunk, slowness in movement, also known as bradykinesia, poor balance or coordination, and speech difficulties. Now, having Parkinson's for the past 14 years, I can say that I experience all these on a daily basis. I typically struggle with tremors, stiffness, especially in the morning waking up out of bed, slowness in movement, have difficulty a lot during the day and poor balance and coordination, and then speech difficulties as well. My speech starts to get soft towards the end of the day. Non-motor symptoms include sleep issues, constipation, depression and anxiety. Pain and fatigue are also key non-motor symptoms and again I've had to have both sleep issues, some depression and anxiety and pain and fatigue.
Chris Kustanbauter:
So let's look at some sobering statistics for Parkinson's. Nearly 1 million people in the US are living with Parkinson's. According to the Parkinson's Foundation, that number is expected to grow to 1.2 million by 2030. Global estimates suggest that over 10 million people worldwide are living with PD suggests that over 10 million people worldwide are living with PD. The highest rates of Parkinson's are seen in people over 65, and men are one and a half times more likely to develop Parkinson's compared to women. Now, in terms of motor symptoms, tremor affects about 70% of people with PD, while rigidity and bradykinesia, or slowness of movement, occur in all people with PD. Finally, in terms of non-motor symptoms, cognitive decline or thinking problems, up to 80% of people with Parkinson's experience some degree of cognitive decline, and this can range from mild memory problems to dementia. Depression and anxiety are common in Parkinson's, affecting up to 50% of people living with the disease. Sleep disturbances, which include falling or staying asleep or restless sleep, can affect up to 80% of people and I happen to fall into that category and up to 70% of people experience chronic pain. Now, these are pretty sobering statistics.
Chris Kustanbauter:
So what are some of the common causes of Parkinson's? Well, the exact cause of Parkinson's remains unknown, but researchers believe it's a combination of factors. Gen Well, the exact cause of Parkinson's remains unknown, but researchers believe it's a combination of factors. Genetics having a close relative with Parkinson's increases your risk, although most cases are not hereditary. Environmental factors exposure to certain toxins may increase the risk of developing PD. These include herbicides and pesticides and industrial chemicals. Lewy bodies, which are abnormal protein clumps that develop in brain cells of people with Parkinson's. Their exact role is unclear, but they are likely involved in the degeneration of nerve cells. And then, finally, inflammation, and ongoing inflammation in the brain may contribute to the damage caused by PD. All right, now let's look at dementia what it is, and the different types of dementia people may experience.
Chris Kustanbauter:
When we hear someone has dementia, what does that really mean? First of all, dementia is not a single disease, but rather an umbrella term used to describe a group of symptoms that affect a person's cognitive abilities. These abilities include memory difficulty, remembering recent events, conversations or names my mom struggles with those on a daily basis Thinking problems with reasoning, judgment and decision-making. Unfortunately for my mom, who's lived with dementia for 18 years, these are severely lacking and she has difficulty with all those and needs help to be able to do those specific tasks Language challenges with speaking, understanding or reading or writing, problem solving Difficulty planning, organizing and completing tasks. Now, behavior, changes in mood, personality and social interactions are often affected. The severity of dementia symptoms can vary greatly depending on the underlying causes and the stages of progression. So how do you diagnose dementia?
Chris Kustanbauter:
When someone is diagnosed with dementia, it means that their cognitive decline has become severe enough to interfere with their daily life and activities. This decline is typically greater than what would be expected from a normal aging person, because often we say to ourselves well, I'm 60 years old, I seem like I forget things all the time, and a lot of times you might hear the doctor or a friend say well, that's just a normal part of aging. I have the same issues. Now the diagnosis for dementia usually involves several steps. First, they'll do a medical history review and the doctor is going to review the patient's medical history, medications and family history. Is there a history of dementia in the family? Because that could be an indicator that the person may be experiencing the same disease. Second, they conduct a cognitive assessment, which involves a series of tests to assess memory, thinking, language and other cognitive abilities.
Chris Kustanbauter:
Now I remember going to the doctor because this with my mom and dad and they gave my mom groups of words to remember and it's been a long time. But if I recall correctly, they gave her 10 words and then repeated them three times. Then they asked her to recite the words. I believe she could only remember two of the 10 words. And then they ask her again the same three sets of words and then ask again and again. She typically did about two out of 10. And then they ask her her age and she was off by 20 years, the day of the week and month and she couldn't remember. It was really very sad watching my mom, who was an intelligent woman who was always very organized, loved to read and was struggling with some of the basic tasks needed for daily activities. It's tough to watch someone decline before your eyes and lose the personality that they had and see them change into someone that maybe they weren't Now. This was 18 years ago and she has progressively declined. Today, if I ask her five minutes after she finished eating lunch, mom, what'd you have for lunch? She'll tell me I don't know, or we didn't have lunch today.
Chris Kustanbauter:
I think the saying is true that it is often harder on the loved ones than it is on the person with dementia, because they're not aware of their memory loss and then, finally, they may do imaging tests and a neurological examination. Now, currently there's no cure for dementia, but there are treatments available to manage the symptoms and improve the quality of life. Are these miracle drugs? I'm not sure, but in my mom's case, they have definitely helped her function, in conjunction with guiding and prompting from my dad and the rest of the family. Now I want to touch on two common types of dementia that you may have heard about but aren't sure exactly what they are. Now it's important to remember dementia is not a single disease, but an umbrella term used to describe a group of symptoms that affect a person's cognitive abilities. So let's look at two of the common types that you often hear or read about, the first one being Alzheimer's disease and the second one Lewy body disease.
Chris Kustanbauter:
Alzheimer's disease is characterized by an abnormal buildup of protein clumps in the brain, called amyloid plaques and tau tangles. Now, these plaques disrupt the communication between brain cells and lead to cell death. Symptoms of Alzheimer's include memory loss, and that's typically the earliest and most prominent symptom in Alzheimer's. And then people often have difficulty with language, problem solving, reasoning and judgment. As the disease progresses, personality changes such as apathy, anxiety and depression can also occur. Now, the progression of Alzheimer's typically progresses gradually over time, often in stages. Early symptoms may include forgetfulness and difficulty with new tasks.
Chris Kustanbauter:
Now I follow a few Facebook groups on dementia, and one is the story of a wife who shares her journey and struggle with her husband who went through the stages of Alzheimer's disease. She shared how he initially, in his early 50s, he would forget his wallet when he was going to work or forget to take his lunch, and how it gradually progressed and he was forgetting more things and having trouble completing tasks. Eventually, after diagnosis, the disease progressed and he didn't recognize her as his wife and needed help with all of his daily needs. The later stages of Alzheimer's are what she experienced before he had to be placed in a care facility. Later stages of Alzheimer's can involve severe memory loss, confusion, disorientation and difficulty with communication and problems with mobility, communication and problems with mobility. Now it's heart-wrenching to read these stories like the one I just described, because they had a wonderful life together and Alzheimer's took that away from them. But the one thing I will say is that many people share their stories, which both helps them work through the pain and sadness of the loss of the loved one and also to help others who are struggling with the disease. Now the stories I just talked about and read are ones of hope, dignity for the person who has Alzheimer's disease.
Chris Kustanbauter:
Lewy body disease, on the other hand, is a type of dementia you may have heard about, and it's caused by the buildup of abnormal protein deposits called Lewy bodies in the brain. The Lewy bodies disrupt the production of dopamine, a neurotransmitter important for movement, coordination and mood. Now, those of us living with Parkinson's are very familiar with symptoms caused by lack of dopamine, such as tremors, loss of balance and slowness of movement. Symptoms of Lewy body disease can include fluctuations in alertness and cognition, visual hallucinations, parkinson's-like movement problems with tremors, rigidity, slowness of movement, sleep disturbances with vivid dreams or acting out dreams and problems with thinking and reasoning. Now, in terms of progression, lewy body disease can progress more rapidly than alzheimer's, and the symptoms can fluctuate significantly from day to day or even hour to hour.
Chris Kustanbauter:
Now there's a book I read several years ago called Life in the Balance a physician's memoir of life, love and loss with Parkinson's disease and dementia by Thomas Grabois MD. He was a Boston cardiologist and professor at Harvard Medical School. In his book, dr Grabois shares his experiences after being diagnosed with Parkinson's disease and later Lewy body disease. The book shares his account of his journey, offering hope and inspiration for others facing similar struggles. I would highly recommend it for people with Parkinson's and or Lewy body disease. And one part of his story that really struck me is being a cardiologist. He had great reasoning, thinking and judgment skills and he described, after having Lewy body disease, going into a convenience store and buying a coffee and when he went to pay he handed the person the money and then had to hold his hand out to get changed because he wasn't sure how to, either to pay for or get change from the clerk behind the desk. It was very sad to see how someone could have such a drastic decline in their cognitive function.
Chris Kustanbauter:
All right, now that we have a good understanding of Parkinson's and dementia and how they're related and how they're different, I want to switch gears and discuss living with the differences by comparing a day in my life with Parkinson's and a day in my mom's life with dementia, to hopefully share not only the challenges and struggles that we both go through, but also the hope and gratitude that can be achieved. Now let me start with a day in the life of Parkinson's where I'll share a fairly common day, or maybe add some things from other days in order to give you a flavor for what it's like living with Parkinson's. Now, please keep in mind, every life has a story and each story will be different. So each person living with Parkinson's may have a different story than mine. Some may have similarities, but I wanted to share my story just to kind of give you a flavor of what it's like with a day living with Parkinson's. So here's my story.
Chris Kustanbauter:
It's 2 am and my eyes pop open and I'm wide awake. I think to myself, I can't get up yet. I've only been in bed three to four hours. I can't go on three hours sleep, I'll be exhausted by the afternoon. Can't go on three hours sleep, I'll be exhausted by the afternoon. So I put my earphones in that are connected to my iPhone that sits quietly next to the bed and I pull up my music playlist on my phone and let's say, today's musical selection is oh Dark 30. I have a list of softer, lighter sounds because, as you can imagine, trying to fall asleep to Van Halen or ACDC can be very difficult. So I close my eyes and if I'm lucky I mean really lucky I'll grab a few winks of sleep.
Chris Kustanbauter:
Hopefully it's 3 am, but oftentimes I look over and it's 2, 30 or 2, 45 am, so I slide out of bed like a walrus sliding into the pool and I quietly grab my clothes and try to steady myself. I stand there for a moment and I make sure I have my balance before I put my feet into gear, because my two adopted boxer dogs sleep at the end of the bed on the floor in their dog beds. I don't think they want a big oaf falling on them in the middle of the night. Once I have my balance and I tiptoe out of the bedroom with the grace of an intoxicated person banging into the walls, trying to do it as quietly as possible, I slowly make up my way upstairs and I get the day started. I shut the door and I start by taking my cocktail of seven Parkinson's pills to get the body fired up and functioning and to help alleviate the tremor and stiffness that I experience overnight.
Chris Kustanbauter:
After washing my pills down, I spend 10 minutes doing some stretching exercises to help improve my flexibility, then an additional 10 minutes working on my balance. I feel more nimble and balanced. I'm ready to take on the world. So I turn on the little five-pot coffee maker and get the decaf brewing. I mean, I'm shaking enough without adding fuel to the fire with lots of caffeine, so decaf it is. I spend several minutes writing in my gratitude journal listing three things I'm grateful for, and that really helps me start the day off on a positive note. Then I fire up the computer and now it's about 3.30 am and I spend the next three hours preparing for and editing this podcast, writing articles for the libparkinsonscom website and preparing for and editing YouTube videos for the Live Parkinson's Live, an Exceptional Life YouTube channel, and all these are designed to help you have a great quality of life based on some of the experiences that I've had and some of the experiences and things that I've learned from others.
Chris Kustanbauter:
Now, after doing the YouTube channel and the website and the podcast, I also try to create free resources that you can get on the website by entering your email. Hint hint, wink, wink. I would like to be able to send you helpful information and resources as well as learn what's important for you and how I can help solve some of your issues. Now I also write a monthly newsletter that's free to subscribe. If you go onto the website and just enter your information, I'll send you the free monthly newsletter that's packed full of information ranging from spotlight topic of the month Then also I typically talk about what's new in clinical research, any clinical studies that are going on, and I also provide information on new webinars from the Michael J Fox Foundation, provide information on new webinars from the Michael J Fox Foundation, davis Phinney Foundation, parkinson's Foundation, brian Grant Foundation, a host of the national foundations, and then some of the new podcasts that are out, any new articles that I've written, as well as new YouTube videos. So it's a great way to keep up to date on what's new in Parkinson's and Parkinson's research. So if you have the opportunity, please visit my website, liveparkinsonscom and enter your email address and I'll be happy to send the monthly newsletter.
Chris Kustanbauter:
All right, now the sun's starting to rise and it's time to get moving. I sneak down the steps, I feed the dogs and my wife Mary and I take them for a walk, and then, when we get back, it's off to the fitness center to take a group fitness class, swim or do some individual strength training or balance exercises. Before I leave for the fitness center, it's time for my second dose of medication. Now, while exercise is very important, there are days when my balance or my walking is poor, so I have to adjust the time type and duration of my workouts. After the gym I head home to take care of the dogs and complete my household tasks, which take twice as long as they used to, because both the slowness of movement and stiffness. But also sometimes I have memory problems and forget what I was supposed to do and I have to run around looking for my list to figure out what it was that I was supposed to do. So doing simple things like unloading the dishwasher can be an adventure when you have tremors. For some reason, glasses don't like to be banged together when you're trying to put them up in the cupboard. And because my hand's shaking and one glass is shaking and dancing itself into the next, I have to be careful that I'm not breaking glasses.
Chris Kustanbauter:
Then, of course, there's the making of notes for phone calls to insurance companies or making a list of things to do. Maybe it's grocery list or other things that I'm supposed to get done Now. This always is a chore because first, my handwriting has become smaller and many times illegible. Now it's pretty bad when you can't read your own handwriting, but I typically have those days where I think Now it's pretty bad when you can't read your own handwriting, but I typically have those days where I think what does this even say?
Chris Kustanbauter:
Everything for me in my life is a list. If I don't write it down, I won't remember to do it. My wife is always saying did you get the stuff out of the freezer for tomorrow's dinner, like I asked you to? Oops, I forgot. Or did you make that call and make that appointment? I'm thinking to myself nope, forgot to do that. But I just say it. It's on my list, just checking things off one at a time. Now, if I don't write it down or do the task right away when I'm asked, I'll forget to do it One day. She said can you set something out of the refrigerator? I'll be home in just a little bit. I said sure, and as soon as I hung up I started doing something else and I thought about three minutes before she walked in the door I thought oh my gosh, I forgot to set that out. Luckily I remembered at the last minute and set it out and look like a superstar for being able to remember that I was supposed to do that.
Chris Kustanbauter:
And then lunchtime rolls around and it's time for the next dose of meds and that's going to help keep me functioning going into the afternoon, right after lunch or sometime right before, I usually lay down for a 20 to 30-minute power nap and this is going to help me make it through the rest of the day. So since I've been up at 2, I've been up almost 12 hours. I'll lay down and, if all goes well, I'll nod off for what feels like hours, and I wake up and it's 15 to 20 minutes later. So I leap to my feet like a contestant being called on the price is right and I run down. No, actually, I get out of bed slowly, stand up and get my balance and then I walk gracefully across the floor.
Chris Kustanbauter:
Now here's where my friend Mr Parkinson's like to show up in mid-afternoon. I've learned that if something needs to be done of any importance, I better do it in the morning, when I have the energy and my cognitive skills are at their best. Because when Mr Parkinson's rings the doorbell and pays a visit around 3 to 4 pm, I'm exhausted and I'll often either doze off with head bobs or have a lot of difficulty concentrating. If you ask me to read something a book or a chapter it'll probably take me a half an hour. I may drop the book while I'm reading. I may read the same page two or three times because I had difficulty remembering what I read. I feel like I was shot with a tranquilizer dart a lot of times by mid-afternoon, because sometimes I have difficulty struggling to keep my eyes open.
Chris Kustanbauter:
Now, as 4 pm rolls around, it's time for round four of pills, and this is the time that helps keep the motor symptoms in control. I usually make dinner, which takes me three times as long as it used to. I mean, after all, wielding a knife to cut up vegetables can be adventurous, to say the least. Now, if I try to go fast I may be missing a finger, so I have to do things at a much slower pace and really concentrate so I'm not cutting myself. So after dinner, that's when I usually spend an hour or so playing guitar or tying flies for fly fishing, or sitting outside with my neighbor Don and the dogs, and we solve the world's problems or say hello to the neighbors as they walk by.
Chris Kustanbauter:
Now I try to avoid screen time on the computer, tablet or phone before bed because it can cause disruptions in sleep, which I already suffer from. So no sense in piling on Now as a bedtime snack. It's my fifth round of pills and off to nighty night time, which I'm ready for, because I'm falling asleep on the couch and my wife is saying go to bed. You're falling asleep. So I take several extended release medications and that helps me. Only need to take medications five times throughout the day if that's any benefit, but so does a day in my life sound similar to yours.
Chris Kustanbauter:
I think it's important to understand that there are things I can't do that I used to do, but I say to myself okay, I can't do what I used to do, so I try to learn new things or I adjust the way that I used to do things. I would challenge you to step out of your comfort zone and do the things on your bucket list or the things you've always wanted to do but were afraid to do. Face your fear and learn new things or visit places you've always wanted to go. Hopefully, my story will give you a good picture of what it's like living with Parkinson's, but it's a story of hope and resilience, because after 14 years, I still feel fortunate to be able to do the things that I want to do and interact with my family and continue to do the social activities that I enjoy. Now, before I move on to discussing a day in the life of dementia. I wanted to share with you an offer from audiblecom a day in the life of dementia. I wanted to share with you an offer from audiblecom Now.
Chris Kustanbauter:
If you're not aware of audiblecom, they're your one-stop resource for audiobooks and podcasts. They have thousands of titles for audiobooks and podcasts, as well as audiblecom originals from your favorite celebrities. Audiblecom is offering listeners a free audiobook and a free 30-day trial to audiblecom. Two of the books I've read and highly recommended on audiblecom are Davis Finney's the Happiness of Pursuit, and also check out their podcast called the Parkinson's Podcast. And the second book is no Time Like the Future by Michael J Fox. The audio book is yours to keep, even if, at the end of the free 30-day trial, you decide not to become an Audiblecom member. Now, for complete transparency and because I believe in open honesty and communication, if you decide to sign up for the free audiobook and free 30-day trial, audiblecom pays me a small commission, which I use to support this podcast podcast. If you're interested in signing up for the free 30-day trial and getting your free audio book, visit wwwaudiblecom. Slash exceptional life. That's audiblecom slash exceptional life, and I'll leave a link in the podcast description Now, if you decide to sign up. I thank you for your support of this podcast.
Chris Kustanbauter:
Now let's take a look at a day in the life of someone with dementia. This is the story of my mom, from my eyes Now. My mom has been fighting this horrible disease for the past 18 years, which started as mild forgetfulness and has slowly developed into essentially a lack of short-term memory, incontinence problems and needing assistance with personal hygiene and walking with a walker, and it has become difficult. Up until four months ago, my mom was living in assisted living with my dad, but after two bad urinary tract infections and several falls, my mom went into rehab to recover and she spent the next two months there After she was released. She was released to a memory care unit at a facility about five miles from my dad. Now both my parents are 85 years old and my dad has done a great job for the past 20 years caring for my mom, prompting her, giving her assistance and challenging her cognitive skills with online and written games and puzzles. My dad made sure her clothes were out for the day, she went to meals in the dining hall and ensured she got her medication and essentially helped direct and manage all aspects of her life, I would see the physical and emotional toll it was taking on him. In fact, he once told me that my mom with dementia is the complete opposite of the woman he married. Now that is really heart-wrenching when you hear your dad say that, but I certainly understood where he was coming from. Dementia took away everything she was good at and enjoyed. She was no longer able to cook, garden, travel, participate in church activities. Dementia had stolen who she was. So let's take a look at a day in the life of my mom from my perspective. First, as I mentioned before, my mom's now living in a memory care unit. They have pictures posted next to her door so she knows where her room is, because she can't remember the room number.
Chris Kustanbauter:
Each day my mom wakes up and one of the staff assists her with her personal hygiene and getting dressed. My mom has incontinence problems, so she has often woken up at least twice a night to go to the restroom to prevent accidents. Now, after she's dressed, she uses a walker or a wheelchair to go to the dining hall for breakfast. Then she participates in social and cognitive activities with the rest of the residents. Then they're given some free time. Many of the residents will remain in the common area and sleep or talk with each other. Now my brother visits my mom daily and my dad and I visit when I'm able to get back to my hometown, which is about two hours away, and I try to get up at least twice a month and we all visit together. We all care for my mom. And we ask her what she had for breakfast or lunch and five minutes later she'll say and we ask her what she had for breakfast or lunch and five minutes later she'll say I don't remember, or we didn't have breakfast today.
Chris Kustanbauter:
One of the ways dementia has changed my mom is in regards of her personality. Prior to dementia, my mom was always very kind and didn't like to say a negative word about people. Now she's good at making sarcastic or, in my view, funny comebacks. For example, the other day when I was visiting with my brother, she was easing and said to my brother he's so big, if he fell down they'd need a cream to lift him up. Or she'll say to my dad I'm going to take you to the cleaners for everything you have. And we joke with her because we know it's the dementia talking In the past year.
Chris Kustanbauter:
We are noticing that she may be forgetting her family names, especially the grandkids, although now she will tell people my brother and I are her sons and then we'll ask her what our names are. And sometimes she remembers and does a pretty good job at it, but other times you can tell she really has to think about it or need prompting. Now her long-term memory is great. She can remember things from high school. It's amazing how she can remember. She can't remember what she had for lunch five minutes ago, but she can remember events 50, 60, 70 years ago.
Chris Kustanbauter:
One of the things we talk to the staff about is telling her that they're going to do something, rather than asking her. So they may say, instead of saying, do you have to go to the bathroom, they say, come on, we're going to go to the bathroom, because otherwise she'll always say no, not to be mean, but it's just apathy. If you ask her to do something, she'll say no, that's okay. But if you say, come on, we're going to go do this social activity, okay. For example, I was up there last week and they had square dancers come in and she says I don't like square dancing. And we said mom, let's sit and watch the square dancers. And she said okay, and so if she's prompted she'll do it, but otherwise she's very apathetic and that's one of the things that's been very frustrating in terms of living with dementia.
Chris Kustanbauter:
One of the things that really breaks my heart is my parents have been married 64 years and they've been together this whole time, except for the last four months Since my mom's been in memory care. Every time we go to visit, especially when we first arrive, they'll say we're going to be doing this activity and she'll say no, they're taking me home or my husband's taking me back to live with him. And knowing that she's unable to do that, it just really crushes your soul because she just looks so lonely and isolated. And then also at the end of our visits she'll oftentimes we're sitting there and if there's three or four of us and we say, okay, we're leaving now, we'll be back to see you tomorrow or the next day, she says, well, I want to go or why can't I go? You guys are always leaving me here by myself and that just it just reaches in and grabs your heart and just makes you feel so bad because tears well up in her eyes.
Chris Kustanbauter:
Dementia is such a devastating disease that it's completely changed my mom and it's sad it's really taken her life piece by piece. My mom was always the type of person that loved, or loves to be with her family, and family was the most important thing. And she also got us involved in activities when we were growing up and came to all our activities. She loved the garden, she loved to read and do crossword puzzles and she loved to go to events with her friends. And dementia has taken all that away and it's a disease that I don't wish on anybody.
Chris Kustanbauter:
But as we conclude this session on dementia and her journey through my eyes and my journey living with Parkinson's, there is some hope and resilience to be taken from both of these devastating diseases, and one is that it tends to bring the families together and to support each other and you have caregivers, but a lot of time you have family and friends that are always willing to help and be a part of the solution to keep the person with either dementia or Parkinson's active in their community. And then, secondly, it gives you hope and resilience to see how someone like my mom has been able to fight dementia for 18 years until it's finally getting to the point where it's really taking a toll on her quality of life. So there is hope, there is support and the key is this to utilize your family, utilize your friends and then utilize resources that are available, which I'll share in the podcast description. Utilize those resources to help you with feelings of anger or denial or a sense of loss, because both of these diseases can cause people to feel a great sense of loss. I hope that you will remain hopeful that they'll come up with new treatments, new therapies to help people with both Parkinson's and dementia live a great quality of life. The key is not to give in but to push and fight and challenge and do everything you possibly can to either live a great quality of life yourself or to help the person with Parkinson's or dementia lead a great quality of life, help them stay active and prevent social isolation, because that's going to be devastating to the person living with the disease. Well, folks, that's a wrap on this episode of Parkinson's versus dementia, my journey living with both and caring for my mom. It's been a journey navigating these two conditions and I hope by sharing my experiences I've shed some light on the differences and challenges, but also on the resilience and strength we can find in ourselves and our loved ones.
Chris Kustanbauter:
Now here are some actions you can take to help yourself or your loved ones. Number one is seek information and support. If you or someone you know is facing Parkinson's, dementia or both, remember you're not alone. There are incredible resources available. In the show notes, I've included links to organizations like the Parkinson's Foundation and the Alzheimer's Association. They offer a wealth of information on support groups and even research achievements that may be helpful. Number two share and connect. Let's keep the conversation going. Share this episode with anyone who might benefit from it. Leave me a comment or find me on social media. Let's build a community of support and understanding.
Chris Kustanbauter:
Number three, and last but not least living with these diseases can be tough, where every day we encounter new challenges or obstacles. But there's so much life to be lived. Embrace the good days, the joy in small moments, and remember hope is always within reach. Thank you for joining me on this journey. Please visit my website, liveparkinsonscom and get the free resources currently available and sign up for the free monthly newsletter. And sign up for the free monthly newsletter. Also, visit my YouTube channel, live Parkinson's Live an Exceptional Life, for videos on living a great quality of life with Parkinson's.
Chris Kustanbauter:
Finally, I would greatly appreciate if you would visit fanlistcom slash liveparkinsonslife and I'll leave a link in the description. On this website, you can leave me a message, leave comments, share success stories, ask questions or suggest topics to help you. Now there's also a chat room where we can grow a vibrant community to learn from each other. I would love to hear from you, because it can get lonely behind the microphone. I want to be able to create content that is helpful to you. I greatly appreciate each and every one of you who have listened to this podcast. I'm grateful every day that you've tuned in to listen. I hope you have a spectacular day and remember when we help others, we help ourselves. Thank you and I hope to see you soon on future podcasts.