09 | The Way Dementia Moves In
09 | The Way Dementia Moves In
In this episode, I introduce my personal experience as a caregiver for my mother, who is living with dementia. My mother will make several guest appearances on podcast episodes in both stories and in spirit. She is my reason “why” for everything I do, and has inspired and supported me through every step of life. When I started my journey as a caregiver, I wrote an influential essay entitled “The Way Dementia Moves In” and am proud to share it with all of you.
The analogy of dementia moving into a household is powerful. Dementia progresses slowly, adding clutter in small increments until it is suddenly everywhere. I am here to help you navigate difficult conversations about health and caregiving with family members and close friends. You're welcome to share your personal stories with me. There is power in sharing experiences, and I welcome you into my journey.
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Intro: Welcome to A Pleasant Solution, Embracing an Organized Life. I'm your host, certified life coach, professional organizer, and home life expert, Amelia Pleasant Kennedy, and I help folks permanently eliminate clutter in their homes and lives. On this podcast, we'll go beyond the basics of home organization to talk about why a clutter-free mindset is essential to an aligned and sustainable lifestyle. If you're someone with a to-do list, if you're managing a household, and if you're caring for others, this podcast is for you. Let's dive in.
Amelia: Welcome to Episode 9 The Way Dementia Moves In. All of us will either be a caregiver or receive care at some point in our lives. We're not solitary creatures. When we're young and when we are old we cannot do for ourselves. As hard as we try, very few of us will be able to live independently and without assistance up until the end of our lives. I am now part of the sandwich generation. I have children of my own and I am the legal responsible party for my mother. I chose to become a caregiver for my mom in 2019 when her signs of dementia were early enough to involve her in the next stages of planning. Today as of the recording of this podcast, I am 42 years old. My mom is 76. When I became a caregiver, I was 38 and she was 72. Her dementia had easily been present for a handful of years at this point.
My children will primarily remember her as living with dementia. Today's episode will be brief. My mom will be a regular guest on this podcast in spirit and in story as she is my why. She has taught me so much about life, time, love, and purpose. I want to make clear that I care for my father as deeply as my mother. We have a strong relationship and he has contributed to my life in many ways as well. He also understands the role of caregiving too.
The best way to introduce my relationship with dementia and caregiving is to share with you an essay I wrote in 2020 entitled The Way Dementia Moves In, I considered updating it, however, I think it's best to share the simplicity of the story from who I was at that time. I find the analogy of dementia moving into a household, a powerful one.
On future episodes, I'll share more practical strategies for having hard conversations with your loved ones, for managing the finances or household of another person, and the many lessons that becoming a caregiver has taught me. Whether you are caring for someone who is ill, who lives with visible or invisible injury, or requires care for whatever reason, please don't hesitate to reach out to me on social or by leaving a review with your feedback. Connection and storytelling makes the long journey of caring for others even more profound.
The Way Dementia Moves In by Amelia Pleasant Kennedy.
Dementia is a roommate that moves in so slowly box by tiny box that you barely recognize the changes in your home and mind. It adds a few items to a drawer in the guest bathroom and hides something else under the couch. A few months later, dementia puts something in the cabinet in the garage that no one ever looks inside. It's always adding to the home and to the brain in such small increments that it can be hard to detect dementia's presence until it clutters and gunks up numerous secret hiding places. I have no idea when the confusion, loss of initiative and memory clouds began moving in on my mother. This new roommate never asked permission, signed a contract, or announced its intention to take over my mother's mind.
I only have my observations and my recollections of the changes in her mood and behavior that I've witnessed. Comparing and contrasting these changes over time led me to heightened concern for her wellbeing, and I encourage you to lead with your intuition if you notice seemingly random differences in a loved one. My mother Janice had been a career gifted education and elementary school teacher. She grew up in a stable household with two parents in a small country town, attended the local college and completed her master's degree in education. She was extroverted and enjoyed spending time with friends. She disliked keeping house or cooking, but kept up with those tasks all the same. She experienced divorce in her early fifties and adjusted to managing her finances and household, begrudgingly.
Transitioning to the new technological world of email, the internet and cell phones never quite happened for my mother. She repeatedly tried to learn, however the many steps required brought frustration. After teaching for 30 and one half years, my mother was eager to retire and begin a life of quiet and calm.
Over the last 15 years since I'd graduated from college, she and I had developed a routine of speaking at least once a week, and then even more frequently after I had children. Several times a year, she'd swallow her anxiety about driving in large cities and drive to visit my family in Baltimore and my older brother's family in Washington, DC. Using a GPS made her more nervous when driving, so she'd rely on her past knowledge of the route and the city in order to reach me. She'd fly to Cape Town, to Boston or to Chicago, wherever I was living at the time, traversing the airports with ease.
We differed in that she was easier going and less of an organized planner than I. She'd stay with me for a few weeks at a time, joking that as long as I cooked, she'd clean the kitchen and help with laundry. But at some point in her mid-sixties, her level of comfort traveling alone decreased and shifted. Instead of putting a handful of well chosen outfits that could be mixed or matched in a suitcase, and then getting on the road, she began to fret about what to bring. She'd make lists and sticky notes of items to remember, then arriving, having forgotten one or two key items.
On the phone she'd ask me repeatedly about our plans and what she needed to bring. We'd confirm the dates and then confirm them again. Before each trip, she began to express trepidation about her driving route, whether it was to the airport or into the city. Sometimes she'd worry so much that our anxiety would upset her stomach, arriving emotionally exhausted. Traveling seemed less and less fun. My older brother and I would chat about our mother's quirks. We joked that she'd lived in and around DC and Baltimore her entire life. She'd driven the hour and a half to the closest major airport countless times. We both grew to expect her complaints upon arrival, why was she starting to speak to us as if visiting was stressful? We didn't recognize that dementia, her new roommate had slowly been moving into her home and into her mind.
Bit by bit it was causing her executive planning functions to be disrupted. This new roommate began creating excess chatter in her brain when her mind was supposed to be focused on driving. Dementia was also slowly turning up the knob on her anxiety in such a smooth and unnoticeable way that we had no awareness of how much it had increased. Neither she nor I had any idea this invisible visitor had moved in, was beginning to make itself comfortable, and that it planned to eventually impact multiple areas of both of our lives.
Thanks for listening. Talk to y'all soon.
Outro: Thanks so much for tuning into this week's episode. If you liked this episode and know of just one other person that can get value from it too, I invite you to share it with them. I'd be more than grateful. I'd love to stay connected with you too. Make sure to follow this podcast to connect with me on Instagram @apleasantsolution and join my community at www.apleasantsolution.com. Talk to y'all soon and remember, you are more organized than you think.
