When Jessica Smith’s mom, Patti, was diagnosed with Alzheimer’s disease in 2014 at the age of 61, she remembers wanting to hide. She felt shame and fear as her family’s world and daily realities changed. Today, she sees how Patti’s diagnosis and this journey have become part of a greater purpose.
Over her nearly decade-long role as Patti’s caregiver, Jessica has become a certified dementia expert and began training as a professional death doula to offer families end-of-life counseling. She’s also discovered a voice as an advocate in the online Alzheimer’s caregiving community, chronicling her family’s journey on Instagram under the handle @alzheimers_awakening. In many ways, Jessica has witnessed how the diagnosis has encouraged new, special connections with her mother and others in her life.
Through dozens of road trips and thoughtful family planning, they have navigated a long-distance care plan for nearly five years, splitting time between Jessica’s home in North Carolina and Patti’s in Florida since 2018. She weighs in on the trials, tribulations, and triumphs of a day in the life as a long-distance caregiver. Read her story:
On healthy, flexible daily routines:
Jessica’s typical “day in the life” as a caregiver always begins with self-care.
“I always take a few minutes to meditate and breathe before I do anything — before I look at my phone, make coffee, and wake her up.”
When it’s time to wake Patti, she uses a soft voice and simple affirmations.
“I like to set the tone with her by saying phrases like, ‘Mommy, are we gonna have a good day? Listen to the birds; can you hear them? The skies are blue!’ I try to infuse her brain with some positive notes right off the bat.”
Their morning continues with a big glass of water, coffee in the kitchen, and listening to records. Then breakfast, showering, and getting ready for the day. Most days continue with tiny adventures: running errands, visiting the park, or going plant shopping. Slower days are spent watching Disney animated movies or sitting on the back porch listening to the birds. Often, it’s simple tactile activities, like petting the dog.
“Every day just needs to be very flexible; we just can’t have too much focus on making certain things happen. I just listen to what her needs are. As a caregiver, you can have one million plans you want to accomplish in a day, but if Alzheimer’s has a different plan, you just need to ride those waves and go with whatever is best for your loved one overall.”
On navigating the diagnosis and family caregiving:
In hindsight, Jessica believes Patti’s diagnosis could have come sooner. It took multiple family interventions to convince her it was time to visit a neurologist.
“It was really difficult; my mom did not want to face this at all. She was very much in denial when she first got her diagnosis.” Jessica later learned denial was a symptom of her mom’s Alzheimer’s disease. While the diagnosis felt overwhelming, assuming the role of caregiver and advocate felt more like a calling.
“My mom raised me to be the independent and super strong woman I am, so in many ways, I almost feel like she was preparing me for this.”
She says the family didn’t necessarily collectively decide on a care plan; instead, she inserted herself.
“I saw that there were some things that weren’t being done for my mom that I felt needed to be done. She wasn’t letting my stepdad, Paul, give her some of the care that she needed. So I just started inserting myself and visiting more often, having her come to North Carolina to stay with me, so I could really start seeing those day-to-day needs — not just talk on the phone and hear her and my stepdad say things were okay. I needed to see it for myself.”
This prompted a larger family conversation involving Paul and Jessica’s two younger sisters. Together, they formulated a family care plan by leaning on their individual strengths.
“We looked at what are all of us good at and explored how we can use those things to serve our parents. One of my sisters is very analytical and data-driven, so we decided to make her the power of attorney and the legality point person because that’s her strong suit. Out of the three of us, I’m the feeler, the more emotional one. I see these feelings and these difficult situations head-on, so I became more of the hands-on caregiver.
Jessica recognizes how her role has been important for the family dynamic.
“Those are my skills — to be the leader and remind people, ‘Alright, everybody, this is what’s happening. Let’s face it, and let’s move forward.’ Otherwise, I think my mom and stepdad may have sequestered themselves and acted like nothing was happening.”
She adds that her father (Patti’s ex-husband) maintains a great relationship as part of the family, sharing holidays and even offering financial support with her stepdad Paul’s blessing. “It’s so lovely, I’m so grateful for it.”
On long-distance caregiving:
Three years into Patti’s diagnosis, Jessica initiated discussions with her family about moving to North Carolina to be with Ken, her then-boyfriend and now-husband.
“I had huge meetings with the family asking, ‘Is it okay that I leave?’” she recalls. “I was the only one in the family studying Alzheimer’s, and everyone else [in my family] just had their heads in the sand. I knew what was coming, but I also knew I had to follow love and my heart.”
Her mother was the one who told her to go. “She told me, ‘Despite my disease, I want you to go.’ So I went.”
In 2018, Patti made her first trip to visit Jessica and Ken, a week-long trip that Jessica says “set the ball rolling” for a split-time caregiving plan. For nearly six years, the care model has worked well for the family, and the two grew to cherish their time on the road together.
“My mom’s always been a road warrior. She loves road trips, so she was pretty great in the car throughout the journey, despite some bladder control issues.”
However, Jessica noticed the toll the 8-hour drive takes on her mother following Patti’s last visit. She wonders how much longer it’s feasible.
“Even though I think my home is better overall energy for her, I wonder if taking her out of her element isn’t the best thing for her anymore. These are some of the difficult decisions that you have to make; it may be the best for you but not the best for the person you’re caring for, and that’s something that I’m currently thinking about quite often.”
When it comes to balancing long-distance caregiving duties, Jessica admits it isn’t easy.
“It’s so hard because I also have a day job that requires a lot of travel. So I just get sick of traveling sometimes; I know that’s a privilege, but it’s difficult to balance. Sometimes I feel myself getting so stressed that I know it’s probably not good for my body. I try to listen to myself, to allow space between the trips and the phone calls, in between the emotional support I give.”
She says she wouldn’t be able “to do this in the same way” if it weren’t for Ken, who she’s known since 2003 and began dating long-distance in 2016.
“He moved from New York to help care for his mom, so from that perspective, he just gets caregiving and the selflessness involved…so he supports me and us one million percent. He is certainly the dream scenario.”
On connecting with her mom through moments of joy:
Jessica says “keeping joy at the forefront” is important when connecting with a loved one with Alzheimer’s disease.
“Despite the disease, despite whatever is going on, life does not and should not stop. We can still find moments of joy between the hallucinations, the soiled pants, and the aggression. There are still moments to enjoy and laugh together.”
Music will always be her favorite way to connect with her mother — even as Patti forgets the lyrics and her lively dancing slows to an occasional “shimmy.”
“Music is everything to us, and it’s probably the one thing that gives me so much peace, knowing that even when my mom stops talking, even when she no longer remembers how to chew, even when she is completely silent, I know that we will still have a connection through music, even if it’s just sitting there with both of our energies and listening to these songs…it’s just about becoming okay with each adjustment through this passion. Music continues to be a source of bonding and enjoyment for us. I know that that will never go away, even if she’s not expressing her joy in the same way.”
Laughter is another source of connection, even though Jessica accepts that will also fade with the progression of the disease.
“My mom and I love to laugh. We love to joke around and just be happy. It sounds so cheesy, but that’s a way that my mom and I have always been alike, and my husband, too. The three of us have such a beautiful bond when it comes to enjoying life and being happy together. That will continue to carry us as long as possible, and one day, when my mom is not laughing, we’ll still be laughing around her.”
On responding to challenging moments and difficult behaviors:
Jessica’s foundation as a meditation practitioner and teacher is “crucial” for how she responds and interacts with her her mom on a daily basis. She encourages caregivers to explore practices to pull from when dealing with challenging moments and difficult behaviors, sharing three impactful tactics for finding her calm:
1. Remember that everything is temporary.
“The lesson of impermanence has been probably one of my life’s biggest lessons of my life…it has made me understand that if my mom is exhibiting aggressive behaviors in a moment, it won’t last forever. But it’s also made me realize that when my mom is having a really good day, that won’t last forever. So it allows me to fully appreciate those great moments and not to cling to the ones that suck because they won’t be around forever.”
2. Connect with your “why.”
“The reason why I’m so involved is to help my mom to provide for my mom the best life experience possible, given the situation. It’s so easy to see behaviors coming from someone and just blame the person and not the disease, but would we ever blame a cancer person for not having hair after radiation? No, so why do we blame the behaviors of loved ones with Alzheimer’s or dementia symptoms on them? They’re not doing anything; it’s being done to them. If my mom exhibits a behavior that is not normal to her — like hitting as part of a hallucination she’s having — I just dig deep for that care, for that soft voice.”
3. Walk away when you need to.
“Years ago, when I would get annoyed with Alzheimer’s, sometimes I would just have to walk away. It’s hard not to lose it. It’s still my mom, and it’s still really difficult…sometimes I need to take a beat and shed some tears behind my sunglasses or just turn around for a second and let a bunch of tears come out. I don’t like to hold that stuff in; I like to allow it to come out.”
On finding community and purpose in the journey:
Documenting their journey on Instagram began as an outlet for Jessica to lean into her love for writing. It helped her release the raw emotions of the diagnosis and its impact on their lives.
“I started writing almost because I didn’t know what else to do. I am a very introspective person. I meditate and journal daily, but there was something different about just putting it out there on a public platform. The more I wrote, the more messages I got, like thanking me for people seeing my words as an outlet for them. I just think it’s so beautiful how one person’s pain or struggles can connect with someone else and help them feel not so alone.”
She shares their best moments and biggest challenges, using the account as a “live journal” of their experiences and daily activities together.
“We had one video that kind of went viral — it had about one million views — and then a lot of people started following us,” she recalls. As her account’s engagement grew, she realized it was fostering a space for the caregiving community to connect over personal experiences and educational content.
“I had no intention of this, but people just began speaking back and forth, helping each other. I think it’s so beautiful that this community has come from it. I love to help, and now that this community is there and people are sharing my page with other family members who are struggling, I feel like it’s a responsibility and an honor to get to respond to all these people in this community.”
She says she’s also learned so much from the online community in return — like discovering Patti’s recent hallucinations resulted from a UTI.
“I have learned so much from Instagram, other people sharing their stories, and other professionals, like speech-language pathologists and dementia specialists. It’s such a rewarding place because you have that sense of community and learning.”
These connections help Jessica find purpose and meaning in her mother’s nearly decade-long journey with Alzheimer’s disease.
“I’m just so grateful to my mom in this journey — just to be reminded how much I love writing, how alive it makes me feel, and how so many people can resonate with it. This all makes me feel like something bigger than myself is working the words through me.”
Looking back, Jessica says it feels silly to think of the shame she felt about Patti’s diagnosis. This community has exposed her to resources and community to navigate the diagnosis.
“Community is very important because [getting a diagnosis] can feel so isolating. I felt a lot of shame going out to eat. If my mom did something like sip her soup out of the bowl rather than using her spoon, I would be mortified at first. It took me a while to get to the point of thinking, ‘Who cares?’ This is happening to so many people, but I didn’t know until after researching the disease and connecting with people. I thought we were the only family that was dealing with this, but I quickly learned that wasn’t true.”