A Son's Tribute: Navigating Alzheimer's with Love and Resilience

How do you cope when a loved one's vibrant personality starts to fade away due to Alzheimer's? Join me, Keith Harvel, as I share my deeply personal journey through my mother's battle with this devastating disease. This episode is a heartfelt tribute to her, filled with anecdotes that paint a picture of who she was before Alzheimer's began to obscure her joy. We'll explore the early signs our family missed, the emotional toll, and the crucial importance of recognizing the symptoms early to seek timely medical intervention. This is not just an episode; it's a call to awareness and action for anyone facing similar challenges.

Navigating Alzheimer's as a caregiver is an arduous path, but it is also a testament to the power of love and resilience. Reflecting on my own caregiving experiences, I offer practical advice on planning, staying informed, and prioritizing self-care to support those who are on this journey. I emphasize patience and resilience while acknowledging the emotional strain caregivers endure. As we conclude, I share resources like the Alzheimer's Association and local support groups, reminding listeners that they are not alone in this battle. Together, we can thrive through the toughest times.

Transcript

Speaker 1 0:07

Welcome back to another episode of the Village Chronicles podcast. I'm your host, keith Harvell, and it's so great to be back. You know we started this journey with this podcast together early this year, but after a few episodes we quickly had to make a U-turn and put our focus on my mother, who had been living with Alzheimer's disease for about 10 years. Alzheimer's is one of those diseases where everything could be stable one day, then make a drastic change overnight. Unfortunately, my mother's battle with the disease changed for the worse over the first few months of this year and she passed away from it this past May. So my focus today is to take this time to share a little bit about my experience, how it impacted myself, my family and others who were with my mother during her journey with this disease. So if you're a note taker, now would be the time to grab that scratch pad and pen, pull up notes on your phone, follow along and learn through me.

Speaker 1 1:14

So what is dementia? According to Alzheimer'sorg, dementia is a general term for a decline in cognitive function that is severe enough to interfere with daily life. Alzheimer's disease is the most common form of dementia, accounting for 60-80% of all cases. It affects memory, thinking and behavior. According to the Alzheimer's Association, over 7 million Americans are living with Alzheimer's and this number is expected to rise significantly in the coming years. Alzheimer's Impact Movement, also known as AIM, says that Alzheimer's is one of the most expensive diseases in America. In 2024, the direct costs to our American society of caring for those with Alzheimer's and other dementias will total an estimated $360 billion. By 2050, this number could go as high as a trillion dollars. There's a study found that in the last five years of life, the cost of a person with dementia on average total more than $287,000. And again, this is in 2010 dollars. This compared to $175,000 for a person with heart disease and $173,000 for someone with cancer. According to the Alzheimer's Association, alzheimer's, or some form of dementia, kills more people than breast cancer and prostate cancer combined. For additional information on these figures, please go to alzorg slash facts.

Speaker 1 2:56

So let's talk a little bit about mom. Let's talk about mom. Memories of my mother. They're just filled with joy. Just joy, man. Her smile, her laugh, how she was around others, just joy. She just had this way of transferring her joy as well. It wasn't just like she was just a happy person, but her joyness, her happiness, her love for people affected, everybody. She came around. She just had this really unique way of making people feel seen and welcome. It didn't matter what place of business neighborhood we walked through. When she encountered another human they were blessed with her presence. I can't even exaggerate it enough because it's true. It's true, you know, they say certain artists they just have that it factor. She got that it. Yeah, that was mom. She was a superstar.

Speaker 1 3:52

But the early signs of cognitive issue for mom they were subtle but noticeable. I noticed it in her speech and conversation with me over the phone. First, during conversation, she would just kind of lose the words to respond, like you know, you're having a conversation with somebody, they're engaged, but she couldn't put the words together. Again, subtle but noticeable. There was a time when she couldn't find her car. I mean, she had went to the movies with one of my nieces. They came out to the movies and she had no idea where the car was. You know, I know a lot of us do that You're like dang that park over here, that park over there no, it's a little theater. She couldn't find the car. So they called my stepfather and he wasn't too. They didn't live too far from the movie theater. He drove up and the car, literally is parked right in front of the theater. Again, subtle, but noticeable.

Speaker 1 4:59

You know, typically we people, humans we just blame it on age. Oh, she just getting old. Oh, don't worry about it, mama. I know what you're trying to say, mom. I got it. I got it. We're all a little forgetful. It happens to all of us. We never put a name to it, just ah, she just getting a little old. This is what happens when you get older. As a family, when we discussed these things, we found that each of us were experiencing some similar occurrences. This was happening to all of us. So we talked with her doctor about it. I think they did a series of tests and then they informed us that that forgetfulness and that change in behavior were indeed early signs of dementia. So my advice is, when you notice consistent erratic behavior similar to what our experience was, jot down those days and those times of when you notice these things, talk to some other family members who are around your loved one and ask if they too are noticing a change in behavior and schedule an appointment with your loved one's doctor as soon as possible.

Speaker 1 6:08

Okay, they say that there's levels or stages to this disease. So if you're going to categorize it, just think mild symptoms, moderate symptoms, severe symptoms, moderate symptoms, severe symptoms. There really is no guide to predict how long a person will stay in a particular stage of their disease. Some patients may stay with a mild impairment for the rest of their life no-transcript. So let's talk about mild symptoms first.

Speaker 1 6:48

So mild symptoms would be memory loss, cognitive difficulties becoming more pronounced, and it's interesting how the mind works and how this disease impacts people. They'll remember songs from long ago, best friend's name from a long ago, maybe an address they lived at 20, 40, 50 years ago, 60 years ago, but they can't remember what they ate for breakfast. They can't remember the person that knocked on the door, who they were, they can't remember things that just happened. So that short-term memory gone. So they may have trouble with planning, organizing, managing their finances. They might, in some cases, have mood swings. Fortunately, mom's personality was the way it was then, was kind of the way it was here Now. We didn't have too many issues with the mood swings, fortunately, but they'll have some difficulty with completing tasks. So what's the impact? Some of the daily activities may be still manageable, but they're going to need some assistance. Like mom, she knew hey, we're going for a walk, okay, let me get my shoes. If they have laces, she may be able to put the shoes on, but she may have forgotten how to tie her laces. Or she may put the shoes on the wrong feet. Or it's 120 outside. She's wearing a full on sweater. So those things right.

Speaker 1 8:37

Moderate symptoms this is where the memory loss is going to get a lot more severe. There may be some confusion. The patient may have difficulty recognizing family friends. She'll know you, but she can't say your name. Maybe, but you'll say hey, who's that sitting right there in that chair? She knows the face but she can't say the name. These changes in personality and behavior may be more pronounced, maybe more pronounced.

Speaker 1 9:14

Your loved one may start to wander, right, you know they may walk out the front door without anybody knowing and you know, sometimes with a, like my mother's case, you know cause we kept her tidy. You know mom was tight. You know she wasn't all disheveled and all that stuff, you know. So if she's walking down the street by herself neighbors, people she waves at everybody, she wants to hug everybody. She may have to say, hey, how you doing, may not be able to say more than that, but people see just a well-dressed senior going for a walk, not realizing she's wandering and doesn't know how to get back home. So in these cases you're going to need to increase the supervision.

Speaker 1 10:03

This person may need help with dressing, bathing, eating and some cases, there may be some incontinence issues. So you may have to get the adult diapers for your loved one at this stage. Some of them don't, but you may need to. At this stage you may need to prepare the meals. You know. You may need to child-proof or adult-proof the kitchen, maybe put the knives in another area. You know, if you got a gas stove, take the knobs off. You may have to find a lock for the front door to lock it from the inside out so you can make sure you know they're unable to get out on their own. You may need to install cameras cameras in the hallways, out in the front, in the back. You may put some chimes on your doors so you know when they're leaving, or put some bells on their shoes, like the little kids had their little bells that you put on their shoes. You can hear them. You may need to put some little bells on their shoes just so you could be aware. Okay, because we want them to be as safe as possible.

Speaker 1 11:16

Now, severe symptoms this is when they lose the ability to communicate coherently. I mean, in mom's case she was speaking more gibberish at this point no words were really coming out and if they did, it was on accident. She just couldn't put the words together. She knew we were present but we don't know if she recognized us or not. My mom was bedridden for the past 12 months of her life, so a lot of caregivers in and out, so she'd recognize, but she couldn't because she could not speak. She definitely couldn't control bladder bowel function, trouble swallowing, could not walk.

Speaker 1 12:11

Again, this is the severe part of this disease where the body is starting to shut down. So in this case, full-time care and assistance with all daily activities. Again, especially with a loved one being bedridden, everything has to be done for them. So we made again, as I've been speaking here, we made the decision to not put mom in a care home when we were told at a hospital stay a year and a half ago that she needed to go to hospice. They wanted her to go into a hospice because they didn't think she was going to make it but a couple months. But we said no, she's not going in a home, but a couple months. But we said no, she's not going in a home, we're going to make it work. So we put together a team of caregivers and in-home nurses, in addition to immediate family, to provide 24 seven support, and I can tell you it truly took a village to help provide daily care for my mother, and I'm forever grateful to all who assisted in making mom as comfortable as possible. And when she passed, we were all there. She was able to be with her family and loved ones as she transitioned. So we just thank the Lord for that.

Speaker 1 13:23

But let's face it, being a caregiver is not easy. It's a selfless act. It requires patience, understanding, effective communication, constant attention. Our main goal was to establish a routine to help mom feel secure, comfortable and loved. Despite how hard this was, there were many moments of pure joy that made it all worthwhile.

Speaker 1 13:52

For any of you who will take on the job of a caregiver, it is crucial to prioritize self-care and seek support when needed. What's that old saying you can't pour from an empty cup. Make sure for yourself to recharge mentally, physically and spiritually Super important. So let's just touch on healthcare a little bit. You know healthcare is a monster, as we all know A lot of confusion. But there are resources, there is support. But I don't know everybody's situation. But do your best to get things in order early. Create a list of who the providers are, what insurance your loved one has. Gather a list of support services. Have phone numbers for everyone who was involved in assisting your loved one. Keep this information and a list of phone numbers in one central binder with tabs. Inform your caregiver team of where this binder is and update it regularly when any changes are made. Communication is key. Make sure lines of communication are always open with one another. This is a team sport. No one can do this effectively by themselves.

Speaker 1 15:06

Okay, so some advice. You know, losing my mom to Alzheimer's was one of the most painful experiences of my life. The emotional toll of just watching her decline was tough. But my peace came in my support group, my family, my friends, and you know my spiritual counseling. You know I've got've got some mentors that I speak to on a regular basis from my church. But for those going through a similar journey, know that it's okay to grieve and to ask for help. Don't do this by yourself. Lean on your support network and take care of your overall health.

Speaker 1 15:51

Through this journey, I learned the importance of patience, resilience and the power of love. My advice to other caregivers is to plan ahead, stay informed and take care of your own well-being. It's a tough road, but you're not alone. And as we wrap up, again, thank you for joining me today. I hope my story provides some comfort and guidance to those facing similar challenges. For more information and support, please check out resources like Alzheimer's Association Again. Reach them at wwwalzorg and your local support groups in your area, and feel free to reach out to me within your own stories or questions as well. It's a journey and you don't have to do it alone. Until next time. Remember together we thrive. Let's get it you.