In this heartfelt episode of Talk to Me Michele, we delve into the emotional journey of caring for a loved one with dementia. Michele shares her deeply personal experience with her mother’s diagnosis, reflecting on the early signs, the stages of dementia, and how it reshaped their family dynamics. From adapting to new caregiving responsibilities to finding ways to keep her mother connected to the things she loved, Michele offers insights on navigating the toll this condition can take.
Join us as we explore the challenges of being a 24/7 caregiver, the moments that brought peace, and the importance of cherishing small joys. Whether you’re on a similar journey or seeking understanding, this episode reminds you of the power of love, patience, and family support. Listen in for advice, resources, and a tribute to all those who find strength in caring for others.
[00:00:09] Talk To Me Michele.
[00:00:52] So that's a very personal topic of mine. Dementia is a condition that affects millions of families and when it touches someone in your own family, it doesn't come across just as a diagnosis. It changes everything about your daily life and your relationships.
[00:01:08] For me, this journey began with my own mother. She was once the fierce, independent woman and loved taking care of her family. But I'm telling you, over time, dementia slowly started taking away pieces of her world.
[00:01:23] Moving to Texas was a turning point. You know, we move here from Memphis and that's when we started seeing changes in her behavior and her memory and we start seeing signs we couldn't ignore.
[00:01:34] So in this episode, I want to share our family's experience with her dementia from the early signs that we didn't recognize to the challenges and moments of joy that caregiving brought all of us as a family.
[00:01:46] My hope is that sharing her story, we can bring more understanding and support to others facing similar experiences.
[00:01:59] Sometimes I have friends that will call me because they know I've gone through this experience and they start asking, you know, what are the first signs of dementia?
[00:02:05] So with my mom, they were subtle at first. They're very easy to overlook because she began forgetting small stuff like where she put the keys, repeating questions that she had already asked us.
[00:02:18] So we chalked it up like, you know, she's aging and it's a memory slip and it happens here and there, but it felt fairly normal.
[00:02:26] It wasn't nothing out of the ordinary, but over time, it started happening more and more.
[00:02:31] It became very frequent and her behavior started to shift in ways we hadn't seen before.
[00:02:37] She grew more irritable and would sometimes get frustrated over simple tasks that used to be second nature to her.
[00:02:43] Now, when we moved to Texas, we took her out of her element.
[00:02:48] You know, she had a life in Memphis.
[00:02:50] Her family was still in Memphis, but the symptoms seemed to intensify once we got to Texas and being out of her element made her very confused.
[00:03:02] More frequent memory loss than that was more noticeable.
[00:03:06] She would get lost in her own home sometimes, you know, even when she was able to drive.
[00:03:11] If my sister was sharing a story with me, when she followed my mom, they were both going to the same spot.
[00:03:16] And she was like, you know, she can't drive no more.
[00:03:18] It's very confusing and we don't want nothing to happen, of course.
[00:03:22] But the routines and comfort she once had were gone.
[00:03:26] And it was like we were seeing her drift further away from herself every single day.
[00:03:31] The realization that it was more than typical aging.
[00:03:35] And she's just, you know, struggled with so many tasks that she had done her entire life, especially when it came to cooking.
[00:03:43] My mom loved to cook.
[00:03:45] It was her way of showing love to the family.
[00:03:48] But I will never forget one Thanksgiving when she knew these recipes like the back of her hand and it started being a whole new ingredient and different stuff.
[00:03:57] She just couldn't follow the recipe that she had known by heart.
[00:04:00] And that was unlike her.
[00:04:02] And that's when we knew something deeper was going on.
[00:04:05] Because my mama in the kitchen, she's like that old girl from The Help.
[00:04:09] Mimi don't burn no chicken.
[00:04:10] Okay?
[00:04:11] That's my mama.
[00:04:12] These changes weren't just forgetfulness.
[00:04:14] They were signs of something much more serious.
[00:04:17] And the diagnosis that we got that she did have dementia, it gave us the answer.
[00:04:23] But it was very heartbreaking because we had already started thinking, you know, maybe it's Alzheimer's, you know, dementia.
[00:04:31] So we got our answer on exactly what was going on.
[00:04:34] You have to understand dementia generally progresses in stages, each bringing more challenges as it affects memory, behavior, and physical abilities.
[00:04:44] Now, in the early stages, they may experience mild memory loss.
[00:04:48] It seems like regular things you would forget about, along with some, you know, subtle changes in mood or their personality.
[00:04:56] But when it moves to the moderate stage, the memory gaps widen, the confusion gets worse, and basic tasks become more difficult, even impossible to do.
[00:05:07] And in the late stages, dementia affects nearly every basic task.
[00:05:13] In every part of that person's life, they lose the ability to speak clearly, they require constant help, and they struggle even with the simplest movements or daily activities.
[00:05:28] My mother's journey through these stages were gradual yet distinct.
[00:05:31] You know, at first we noticed small memory gaps like forgetting where she left items and mixing up dates.
[00:05:36] But eventually, she began forgetting tasks that she had done her whole life, like the cooking, the navigating familiar places that, you know, were in the neighborhood.
[00:05:46] The transition marked the beginning of her need for assistance, more, you know, day-to-day routines.
[00:05:52] And over time, her condition progressed.
[00:05:55] Her confusion grew, and she needed help nearly every aspect of her daily life, from personal hygiene to ensuring that she took all of her medications.
[00:06:05] Now, it's important to remember that dementia can range widely from person to person.
[00:06:10] In every case, it's not going to be the same.
[00:06:12] While some may lose certain abilities early on, others can retain them until the later stages.
[00:06:18] Each experience with dementia is unique, so it means each family's journey is unique as well.
[00:06:24] Now, for us, that meant that we had to adapt to constantly, you know, making sure her needs were met.
[00:06:29] Learning to cherish the moments that she was fully present while we were preparing ourselves for the next stage of the journey.
[00:06:36] Now, I know when it comes to this caregiving situation and families, you know, being involved, you know, you think about, you know, how hard it is on the families and the caregivers, which is true.
[00:06:44] But you also have to take into consideration what the person with dementia is going through.
[00:06:49] You know, like my mom had always been incredibly independent and a vibrant woman with a true love for cooking.
[00:06:55] I mean, she spent hours in the kitchen preparing meals for our family.
[00:06:59] That's why my dad is so spoiled right now.
[00:07:02] When they were younger and she wasn't able to make him a fresh meal, my mom had a freezer made of nothing but home-cooked meals for my dad, labeled, you know, packaged and frozen.
[00:07:13] So if she couldn't cook, you know, fresh meal that night, he could just go in the freezer.
[00:07:18] So preparing meals for our family, and it was her favorite way to show care and love.
[00:07:23] And she loved her independence, you know, whether it was driving to run some errands, meeting up with some friends, or treating herself to a little shopping.
[00:07:32] These simple activities made her feel fulfilled and in control of her life.
[00:07:37] And she took real pride in doing everything independently.
[00:07:41] Now, as dementia progressed, you know, her daily life began to shift dramatically.
[00:07:46] You know, slowly she started to forget ingredients in her favorite recipes.
[00:07:50] She'd leave things cooking on the stove, not realizing they had been left unattended.
[00:07:55] Eventually, she had to stop cooking entirely.
[00:07:57] You know, it was a painful loss for her.
[00:08:00] She could no longer drive safely either.
[00:08:02] You know, her solo shopping trips that she used to do all the time, and she always enjoyed.
[00:08:08] We couldn't do it anymore.
[00:08:10] Each of these losses took a toll on her sense of independence and identity.
[00:08:14] And it was through pieces of who she was were being taken away one at a time.
[00:08:21] We tried to find ways to keep her spirit alive.
[00:08:23] We did.
[00:08:24] I mean, we found small ways for her to still feel involved in what she loved to do.
[00:08:29] So when we'd have her sit in the kitchen while my sister and I was cooking, you know, she'd be giving her expertise advice from the sidelines.
[00:08:36] You know, that was, you know, baby, need to put a little bit more of that in there.
[00:08:39] So she shared her tips, even directed us on how to season the dishes, like I said.
[00:08:44] Being part of the kitchen was an activity that seemed to bring her a sense of comfort and connection to her old self.
[00:08:50] And it allowed us to keep her engaged.
[00:08:53] You know, so she loved us messing around with each other, joking back and forth.
[00:08:57] Even though she could no longer, you know, cook herself, her role as the supervisor in the kitchen,
[00:09:03] that brought her that sense of joy and purpose that was so valuable to her emotional well-being.
[00:09:08] And we would jam during our cooking sessions.
[00:09:10] So we would play some of the old school stuff that she grew up on.
[00:09:14] Oh, she loved it.
[00:09:19] Caring for our mother quickly became like a 24-7 responsibility.
[00:09:24] It required a lot of coordination between myself, my father, and my sister.
[00:09:30] So each of us took different roles to make sure that she was comfortable and healthy as possible.
[00:09:36] Our dad handled most of her medical needs, taking her to doctor appointments, managing her medications, as well as my sister,
[00:09:43] and ensuring that she stayed on top of her health.
[00:09:46] I mean, he was a consistent companion, I'm not going to lie, and caregiver.
[00:09:51] He was committed to making sure that she had everything she needed.
[00:09:54] My sister and I focused on her daily routines, like making sure that she ate regularly, stayed clean,
[00:10:01] getting her to eat before taking her medication.
[00:10:04] That was often the challenge because her appetite dwindled over time.
[00:10:08] You know, we make small, familiar meals.
[00:10:11] That was to encourage her to eat, knowing that without food, her medications could cause discomfort.
[00:10:17] Bathing was another task that required extra patience and gentleness.
[00:10:22] There were days where she was resistant.
[00:10:25] That made the process exhausting.
[00:10:27] But we knew it was necessary for her health and well-being.
[00:10:30] The music, again, made it really a little bit easier to go through the process of getting her clean
[00:10:36] because it would just put her in a different mindset.
[00:10:40] But as her condition progressed, we had to take extra safety measures around the house,
[00:10:45] like adding locks to the door.
[00:10:47] That was to prevent her from wandering off.
[00:10:49] You hear so many of these news stories about people with dementia just leaving their home.
[00:10:54] There are a few times she tried to leave.
[00:10:56] So we were terrified that that, you know, might happen with her without us even noticing.
[00:11:01] So thankfully, she never made it past the front porch,
[00:11:04] but it was a wake-up call that her safety was something that we couldn't take lightly.
[00:11:11] While caregiving comes with significant challenges,
[00:11:14] we all adapted to our roles.
[00:11:17] You know, we'd support each other.
[00:11:19] We would get frustrated.
[00:11:20] And sometimes we'd be like, look, can I just take the night off?
[00:11:23] So sometimes we'd have to fill in when somebody needed a break.
[00:11:27] I mean, that just is where it is.
[00:11:29] So it's physically and emotionally demanding.
[00:11:32] But having each other, I'm so thankful for.
[00:11:35] Because I see families go through the situation where
[00:11:38] a parent or elder in their family needs, you know, some additional home care.
[00:11:42] And they ain't doing shit.
[00:11:44] They could come around and help for a few hours.
[00:11:46] Come on now.
[00:11:47] This is family.
[00:11:48] Let's do this.
[00:11:49] Now we can talk about the family and the caregivers.
[00:11:52] Because I want y'all to understand that
[00:11:53] watching my mother's personality and abilities change
[00:11:56] due to dementia was one of the hardest experiences I faced.
[00:12:01] She had always been such a strong, independent person, full of life.
[00:12:06] Seeing that part of her just slowly fade away is heartbreaking.
[00:12:10] There were moments when she would look at us with confusion or frustration mainly
[00:12:14] because she never forgot who we were.
[00:12:16] But it was painful to realize that she wasn't fully the same person we had known.
[00:12:21] And the simplest things she loved, like again, the cooking, taking care of us,
[00:12:25] running errands, those were memories now rather than being parts of her daily life.
[00:12:29] So this shift left us all grieving in a way because she was still with us,
[00:12:34] but we knew that she was not able to enjoy what she used to do.
[00:12:38] And trust me, if you are a caretaker,
[00:12:40] you are going to be going through physical and mental exhaustion.
[00:12:43] It comes with caregiving.
[00:12:45] It's very intense because there are days we would feel so drained,
[00:12:51] no sleep, consistently alert to make sure that she wasn't doing something or she was cared for.
[00:12:56] So caring for her was a 24-7 commitment.
[00:13:00] You get emotionally worn out.
[00:13:02] And on tough days, you know, where she was a little bit more agitated or confused,
[00:13:07] we had to talk each other down, you know.
[00:13:09] So teamwork was essential.
[00:13:11] And having my father and sister to lean on made all the difference.
[00:13:15] We took turns giving each other breaks and kept communication open to ensure nothing was missed.
[00:13:20] So without each other's support, it would have been nearly impossible to manage all these daily demands.
[00:13:25] We were all so grateful for the support system that helped us through time,
[00:13:29] you know, when it comes to medical staff, any family that called, checked in, or even came by.
[00:13:34] It just, you know, gave us a moment of encouragement.
[00:13:37] And a moment we could step away.
[00:13:39] I'm not going to lie because it's very exhausting.
[00:13:42] So it wasn't just the physical help that mattered.
[00:13:45] It was knowing that we weren't alone in this journey.
[00:13:50] Now, in my mom's later years, despite the challenges of dementia,
[00:13:54] we were still able to create some truly special memories with our mother
[00:13:58] and moments that reminded us of the joy and love she had always brought into our lives.
[00:14:04] Now, one of the most precious memories of her was her last big family gathering.
[00:14:09] And there was family that wasn't too far.
[00:14:11] They came and we just all chilled at the house.
[00:14:16] We had laughter.
[00:14:17] We had warmth.
[00:14:18] We had good food.
[00:14:19] So she was surrounded by that.
[00:14:21] She loved that type of environment.
[00:14:23] So she was surrounded by her loved ones and the joy on her face was unforgettable.
[00:14:28] My mother loves to laugh.
[00:14:30] So that was a day that she got plenty of laughter.
[00:14:34] Now, in that moment, it seemed like the dementia had faded.
[00:14:37] She was fully present, laughing, reminiscing, enjoying the people she loved.
[00:14:43] And the gathering was one of the last times we saw her so happy.
[00:14:48] And it brought us so much peace and joy to know that she felt the love and the connection of our family.
[00:14:54] Although in the later years, she continued to try to find ways to be involved,
[00:14:58] you know, especially in the kitchen where her spirit was truly alive.
[00:15:01] And although she could no longer cook, she still loved sitting in the kitchen with us,
[00:15:06] offering her supervision, sharing the tips like she always had.
[00:15:09] And she reminds us about the right amount of seasoning, the secret, you know, ingredient you want to put in there.
[00:15:16] So these are moments that have a sense of normalcy.
[00:15:19] And it allowed her to connect with us to the activity.
[00:15:22] And she loved that the most.
[00:15:24] So she was always right there in the heart of family gatherings, sharing her joy and her humor whenever she could.
[00:15:31] These positive moments was what kept us going.
[00:15:34] And they reminded us that even though dementia had taken away so much,
[00:15:39] it hadn't taken away her spirit or the love we shared.
[00:15:43] Knowing that she was surrounded by the family who cherished her allowed us to find the peace in the journey.
[00:15:49] And those memories are now cherished as pieces of her legacy.
[00:15:56] To anyone caring for a loved one with dementia, I'm going to say this.
[00:16:00] Remember to hold on to your patience.
[00:16:03] It takes a lot of patience.
[00:16:05] And above all, you know, you got to approach each day with compassion for your loved one as well as yourself.
[00:16:12] Caring for someone with dementia is a journey filled with the highs and lows.
[00:16:17] Patience is definitely the key ingredient to managing the small and very unpredictable moments that come with this condition.
[00:16:24] You have to try to meet them where they are.
[00:16:27] Adapt into their reality rather than trying to correct them or to even challenge them.
[00:16:34] These adjustments through hard times can bring more peace to everyone that's involved with the situation.
[00:16:40] And don't be afraid to seek support.
[00:16:43] Whether it's through family, friends, a professional caregiver, other resources,
[00:16:47] they've got so many different support groups.
[00:16:50] They're online, they're local, and they can add so much value and peace to your life.
[00:16:57] They provide practical advice.
[00:16:59] And they also give you the reassurance that you're not alone facing these challenges.
[00:17:03] There's so many families going through it.
[00:17:05] Connecting with others who understand the toll of caregiving can make a world of difference.
[00:17:10] There are also organizations like the Alzheimer's Association that offer resources, counseling, and support networks specifically for caregivers,
[00:17:19] which can be a tremendous help.
[00:17:22] Lastly, cherish your small moments.
[00:17:24] Those are simple existences of connection, a smile, a shared memory, or even a moment of laughter.
[00:17:32] They can deeply be comforting.
[00:17:34] These moments are precious reminders of the love you share and of the person that they still are despite the illness.
[00:17:41] Take the time to honor and embrace those fleeting moments.
[00:17:44] They become the memories that stay with you the most.
[00:17:47] In closing, I want to honor my mother's strength and the journey that we shared as a family.
[00:17:53] Despite the challenges, her love and spirit shine through, teaching us the resilience and the importance of togetherness.
[00:18:00] Through dementia may have taken many things from her.
[00:18:03] It never took away our love.
[00:18:05] Through every difficult day and every beautiful memory, we grew stronger.
[00:18:09] And I'm always going to carry those memories in my heart.
[00:18:12] So thank you guys again for tuning into this episode.
[00:18:15] I hope you guys learned a lot.
[00:18:17] And if you are dealing with a loved one that is suffering with dementia, definitely take the time to get the resources and also give yourself some love.
[00:18:25] So that's going to do it for this episode.
[00:18:28] And make sure you guys follow me on all social media platforms at TalkToMeMichelle.
[00:18:34] And make sure you also check out the other great shows on the NBG Podcast Network.
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[00:18:56] I appreciate everything, everybody.
[00:18:58] So have a good one.
[00:18:59] Peace.