Being a caregiver is a role filled with both challenges and profound rewards. It requires compassion, resilience, and a commitment to the well-being of others, often under difficult circumstances. We would like to highlight practical advice, emotional reflections, and the impact of caregiving on both the caregiver and the ones they care for. As a part of this series I had the pleasure of interviewing Katie Kristofic.
Katie Kristofic’s journey to caring for others began while she worked in marketing communications for a pharmaceutical ingredients company that focused on a patient-friendly experience for those administering and taking medication. During the pandemic, her focus shifted to crisis and internal communications to provide timely and accurate information to employees and their families globally. It was doing this work that laid the foundation for her current endeavors. Katie founded The Carefullist in 2023, providing an online social community, resources, and support for family caregivers after her caregiving journey ended when her mom passed away from Alzheimer’s Disease. She recently launched Carefullist, The Podcast.
Thank you so much for doing this with us! Can you tell us a little about yourself? How did you find yourself in this role, as a caregiver?
Thanks for talking with caregivers and holding space for us to share our stories! At the beginning of my career, I traveled a lot and got into the habit of calling my mom nearly every day of the workweek from wherever I happened to be. Those conversations carried through to when I got an office job several years later and would call her on my way home from work. She and my dad took care of my nieces and nephew, so it was fun for me to hear what they were up to since I lived a couple of hours away.
I started to notice some changes around 2008–2009 but chalked it up to her being busy. I started to grow concerned in late 2011 because my mom was a really good cook and something went awry with the turkey at the holidays. She was very upset about it. In hindsight, I now realize that not only could she not remember recipes she committed to memory years ago, but she couldn’t follow the directions even if they were on a card in front of her.
I knew, beyond the shadow of a doubt, that something was very wrong in late 2013 when my parents came to stay with us after our son was born. My husband had to return to work and we had a toddler we intended to keep on her schedule at a local preschool. I couldn’t drive yet (the joy of a c-section), so my dad would take her and pick her up each day.
It was a few weeks before Christmas and we had the house decorated. Each day, my mom would look at the tree; not for five minutes but for about 40 minutes, and then proceed to talk to me about the same cluster of ornaments every single day. She had no recollection that she did this the day before.
I was 32 years old. I had a toddler and a newborn. I had a full-time job with career aspirations. I stood in my dining room realizing for certain that my mom had dementia. And it was absolutely terrifying.
My dad was her primary caregiver throughout her journey with Alzheimer’s. My sister lived in town and was there often to help. As the one who lived out of state, one thing was certain. I wasn’t going to be “that” relative who used the distance between us as an excuse.
I took meals for their freezer when I visited on weekends and I started navigating ways I could help from afar. As technology evolved, it became easier to take things off of their plates. My caregiving role became the person who can get things. I shopped for clothing as my mom dropped weight, I networked and made connections to find local folks who could help with various tasks, and I researched whenever we needed more information about what comes next and what support we might need.
Looking back on your caregiving journey, what’s one lesson you learned that you wish someone had shared with you earlier?
I learned a term in the last few years that would’ve been helpful to know sooner- anticipatory grief. There were times when I was grieving so hard and thought maybe I was going crazy because she was still right there in front of me. Alzheimer’s Disease is called The Long Goodbye for good reason. With each phase and new stage, we said goodbye to more pieces of my mom. You know that scene in Back to the Future where Marty looks at the picture of his siblings and they’re starting to disappear? It’s like that, except there’s no time machine that can fix it.
What was the most unexpected thing you discovered about yourself through being a caregiver?
I was talking with a friend shortly after my mom was officially diagnosed, and I was telling her that I just didn’t know how I was going to do this. My great-aunt also had dementia and depended on my mom, which meant now depending on my dad, sister, and me. My friend looked me in the eye and said, “You never know how strong you are until you’re not given a choice.”
That has stayed with me ever since. We can go through unbelievably difficult things and come out on the other side. We’re not unscathed, but we’re not undone, either. We’re just different. And if I wondered at all before being a caregiver, I knew for sure during and after that whatever I invest my time in, it’s got to be worthy. Notice I didn’t say spend. I said invest. There’s a world of difference between those mindsets.
Were there any moments when you felt like you got it wrong? How did you navigate those feelings and move forward?
When you’re a caregiver, you question yourself more of than not. My personal belief is that if you’re unsure, that means you care. You’re trying your best to do the right thing. With that said, of course, there are things for which I’d like to have a do-over.
There was a period when my mom and my children were at the same skill levels. This was simultaneously easier and harder. It was easier because I didn’t have to shift gears when I was interacting with them. They were all on the same playing field.
It also meant that, because none of them were independent, I had more people who struggled with instructions or needed help than I had enough hands and patience. I was not as patient as I wanted to be, and as they deserved, at times.
If I’m being completely honest, and this is for the benefit of other caregivers who are reading this, a lot of my impatience was frustration that I was a parent of young kids who wanted and needed her mom’s help in raising them. I did not have Alzheimer’s on my bingo card during parenting. And, of course, my mom didn’t have it on her bingo card, either. She was so excited to be a grandma.
People underestimate the amount of time and energy it takes to make sure those in your care are clean, fed, dry, comfortable, and engaged. As soon as you get one thing squared away, something else on that list is undone and needs to be remedied. Over time, I’ve learned to give myself grace. There is no such thing as perfection in caregiving. You do your best with what you have.
Caregiving can be emotionally and physically demanding — what strategies or habits helped you stay grounded and find balance?
This is a great question and I’ll be the first to tell you I never figured it out completely. Caregivers are tunnel-vision-focused on their loved one and living from one moment to the next. The only thing I can think of from a strategy-related perspective is humor.
Comic relief is my go-to. Finding the funny in every situation was a savior to my mental health. My husband shares a similar sense of humor, so we would point out the absurdity of situations and make one another laugh.
When you’re going through rough stuff, the more you can find funny, the better off you’ll be. Shed the worries of being judged. People will judge you whether you want them to or not- that’s not something you can control. So, if you have a dark sense of humor, don’t explain yourself. Find someone who can laugh with you. My sister and I would often say “I’m laughing so I don’t cry.” And trust me, we did plenty of the latter, too.
Is there a particular story or memory from your caregiving experience that stands out as a defining moment?
There were several during our Alzheimer’s journey. You say goodbye to your loved one in pages, then in chapters. My mom lost her ability to speak years before she died. The last conversation I remember having with her was at their house. It was dark and raining after dinner. I was washing dishes and my mom was standing next to me, looking out of the window over the sink.
She was repeating the same few words over and over “dark, rain, children.” I told her I knew it had been a long day and we were going to leave so she could rest (remember, my dad was her primary caregiver, we weren’t leaving her alone). She kept repeating those words and getting increasingly agitated. I was trying to figure out how to soothe her.
Then it dawned on me to stop thinking like a daughter and think like a mother. I said, “Mom? Are you worried about us driving home in the rain?” She let out a long sigh and was calmer. I told her, “It’s ok. I’ll be very careful. Those are my kids.” A small smile turned up the corners of her lips as she pointed at me and said, in Pennsylvania Dutch, “shuhshly”.
This word, in our family anyway, always meant hasty and sort of reckless, the polar opposite of careful and measured. Growing up, I heard it a lot. This was a defining moment for me in our story because it had been a long time since she gave any indication she knew who I was.
In fact, this was the last thing she ever said to me which, if you see my dark humor comment in the previous question, my husband and I reference often now when we talk about her. It makes us laugh every time.
The other defining moment, and he would say it’s no big deal, was a family dinner we had at my parents’ house. This was when my mom could still feed herself but was struggling more often. As the family ate and talked, my husband noticed she was having a hard time eating her fruit.
Without hesitation or fanfare, he picked up her spoon and started feeding her as the conversation continued. To him, it’s just what you do. To me, it was one of the best things he’s ever done because that gesture meant we were doing this together. Having someone with you who understands it all simply cannot be overemphasized. He’s my favorite.
Were you given any advice or had you made any assumptions that turned out to be unrealistic? Unworkable? If so, name them and give examples of why those plans didn’t work.
The one thing I was surprised about, but now realize is extremely common, was how quickly people disappeared from my parents’ lives after her diagnosis. I assumed the people they had supported, but friends and family, would step up now that was their turn. Some did. Many did not. Do not assume the people you have been there for will do the same for you, especially if there is a long-term illness like dementia.
I also assumed a lot of the home health aid services (national names I won’t mention here) had training to stay and work with folks who have dementia. That was not our experience. We ended up finding retired nurses who still wanted to use their skills but not in a hospital/medical practice setting. They were wonderful and my dad felt confident leaving my mom in the care for a few hours to run errands or go to his own appointments.
From your experience, what are “Five Things I Wish I Knew When I First Became a Caregiver”?
1 . The Caregiving Language
Caregiving is part of the healthcare system which has its own language. If you don’t have a job in the healthcare industry, there will be a massive learning curve. That doesn’t mean you can’t do it. It does mean that you need to do more research than you thought, ask lots of questions, and have a method for taking good notes. I wish the people who work in healthcare would remember more often that this is new for most people and explain things that way. Quick tip to save you a lot of time. The word you want to use when you’re searching for pretty much any item is “adaptive”. Adaptive clothing, adaptive utensils, adaptive, adaptive, adaptive.
2 . What You’re Feeling is Anticipatory Grief
For the longest time, I couldn’t describe what I felt; with every downturn or loss of skill my mom experienced, it was like a gut punch for me. Once I learned that anticipatory grief is when someone experiences grief or loss before the final loss, things made so much more sense. It is ok to feel devastated even though your loved one is sitting right in front of you. Grief starts long before someone passes away.
3 . Your Support System Won’t Be What You Think
One of the biggest surprises for me was the people I thought would show up and didn’t, and the people who showed up that I didn’t expect. Don’t assume someone will be there because of their relationship with your loved one. A diagnosis is akin to turning a light on in a kitchen full of cockroaches, suddenly you’re the only one in the room. The good news is that by being open and honest about what’s going on, other people will step in, step up and show up. They may be people you haven’t even met yet. Fred Rogers said, “Always look for the helpers”. There is a growing online community and number of local organizations who want to help. Let them.
4 . Being Present is Enough
You will never be the perfect caregiver. There is no such thing as perfection in caregiving. Let that go. Be present with your loved one. Do your best with what you’ve got. They will feel and appreciate your care. You are doing enough- you’re probably doing more than enough. Remember that your loved one loves you, too.
5 . Everything Will Be Different, But It’ll Be Ok
There was a you before caregiving, there is a you during caregiving, and there will be a you after caregiving. Here’s the kicker- none of those people are the same. You adapt, learn, and change too much to be the same person throughout this process. These growing pains are hard and, more often than not, you wish they’d go away. On the other side of caregiving, the version of yourself is more patient, understanding, and less willing to waste time on things that don’t matter. Life will be different. You will be different. Everything will be different, but it’ll be ok.
None of us are able to achieve success without some help along the way. Who has been the inspiration or model for you? Can you share a story about that?
Growing up, most of the women I knew stayed at home. The ones who didn’t were nurses or teachers. I’m a first-generation female college graduate. It wasn’t until I began working that I met and learned to know women who were in different vocations, and I learned a lot from all of them. Some taught me how I wanted to work; others taught me what I didn’t want to be.
For most of us, I think it comes down to the people who believe in you. I’ve always gravitated toward people who expect a lot because I like a challenge. A colleague and eventual boss of mine, Tracy Nasarenko, was a key influence on me. She taught me how to manage up, down, and sideways. I learned how to balance working and family life. Most of all, I learned what it looks like when a manager truly has your back. She challenged me like crazy, but not unrealistically- it was smart challenges, growth challenges, and “I know you can do this even if you don’t think you can” challenges.
And of course, I have to give credit to my mom. She always told me she “could see me business”. I had no idea what that meant, especially when I originally thought I was going to be a music major in college. But as time went on and I studied communications instead, it was that voice and phrase in the back of my mind. Sometimes you just need someone to plant the seed.
How have you used your success to bring goodness to the world?
I hope that being open and honest about what we went through in caring for my mom will lighten the load for others. I created The Carefullist because I needed to channel my grief. It’s the lasting lesson my mom taught me. As my site and podcast evolve, the dream is to give caregivers something they never have enough of- time.
On average, caregivers spend over 13 hours every month on research for their loved one. Getting that information or ordering that product is important, but it shouldn’t take so long. Caregivers would much rather have quality time with their loved one from a relationship perspective, rather than the transaction-style interactions that often replace it once caregiving enters the picture.
Conversely, caregivers do not have time for real self-care. And no, basic hygiene is not self-care. It’s basic hygiene. If I can give folks time back in their day to truly do what refills their cup- gardening, baking, hiking, painting, carpentry, whatever, I call that a huge success.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
I love this question. I’ve had multiple conversations with other folks in the last months about what I think could be our “Greatest Generation” contribution. I think it’s fixing our very broken care system. The US currently has 53 million unpaid family caregivers, 11 million of whom are caring for people with dementia.
These people are propping the healthcare industry up for free and the problem isn’t going away. The last of the baby boomers turn 65 in 2030- that’s only five years from now. Four percent of people over 65 receive a dementia diagnosis and that number climbs to nearly 34% in people over 85.
We’re living longer and with that comes additional challenges. Over 90% of Americans want to age at home but that’s not always possible given their surroundings. We need homes that are built with aging in mind- wider doorways, zero-entry showers, and building and refurnishing homes that are ready for all stages of life.
The first step of the movement is awareness and I feel the tides shifting there. We have more public discourse on caregiving and grief than we ever have before. The Rosalynn Carter Institute for Caregivers and Elizabeth Dole Foundation, along with the National Caregiving Alliance and other organizations, have made concerted efforts to break through the noise to be heard and affect policy change.
The more individuals who speak up and share their stories on social media, by contacting their representatives, and creating companies of their own that solve gaps in the system, the better off we’ll be. After all, the United States is a capitalist society. Sometimes the solutions have to come from business because that is what wields the power.
Can you please give us your favorite “Life Lesson Quotes”? Can you share how that was relevant to you in your life?
I read this quote a long time ago and it deeply resonated with me. “No matter how badly your heart is broken, the world doesn’t stop for your grief.” I cannot think of a more succinct way to summarize what goes into caregiving, its aftermath, and the relentless waves of responsibility crashing on your shores from the outside world.
The first time I read it, it made me sad and disappointed. Then, I started to use it as a tool to temper my expectations of what life should look like versus what it is in reality. The more you want people to stop what they’re doing, point to you, and say, “Wow, you’ve really been through it. Take a couple of months off and recalibrate,” the more disheartened you become. That does not happen, certainly not in the US. And most caregivers don’t have the funds to give themselves that kind of a break anyway.
This isn’t a pick-me-up kind of a quote and that’s purposeful. Caregiving is intimate. It’s beautiful. It’s heart-wrenching and isolating. It’s an honor and an expression of love like no other. Even with all of those huge emotions and sacrifices, the world continues spinning and expects you to act accordingly.
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this if we tag them :-)
There are many figures I’d love the chance to talk with on myriad topics. But since we’re focusing this conversation on caregiving, grief, and comedy as my coping mechanism, I have to say Stephen Colbert. His 2020 conversation with Anderson Cooper about grief was a defining moment for me.
It was one of the first times I’ve heard a public figure speak so openly and eloquently about loss. It wasn’t the general platitudes and soundbites. It was genuine. It was what I was writing about in personal social posts shared with family and friends. It was what I was craving.
In a similar vein, Stephen’s conversation with Keanu Reeves about what he thinks happens after we die and Keanu said, “The people who love us will miss us.” So few words and yet such power. The whole audience went silent because, at its heart, that is what grief is- love with nowhere to go.
Whether he realizes it or not, I think Stephen Colbert is the keystone in showing the public how to talk about grief. Andrew Garfield and Elmo just had a viral video that I don’t think happens without Stephen’s candor. Anderson Cooper has a whole podcast dedicated to the topic now.
And I don’t intend to short-shrift Anderson. He hosted that initial conversation. I’ve admired him since I sat on the gym floor in middle school watching Channel 1 news. He gave Stephen the platform and context to have the conversation, but it was Stephen’s willingness to put himself out there.
My podcast is dedicated to caregiving and we also talk about grief because the two go hand in hand. The title, Carefullist, The Podcast, is my nod to the great Mel Brooks’ masterpiece, Spaceballs. Most of my guests share where they find joy, even if their sense of humor eluded them through the caregiving process.
Am I grateful that my mom had Alzheimer’s? No- I’ve got a long way to go to get to where Stephen is. But I am self-aware enough to acknowledge that I wouldn’t be doing the work I do today without it? Yes. And Stephen gets partial credit for helping me realize it sooner than I would have otherwise.
How can our readers follow your work online?
You can find our resources, links to our podcast, and social channels at www.carefullist.com or by using @thecarefullist.
