About Holly C.
On February 9, 2009, I lost my beloved grandpa, Cecil, to prostate cancer after a 17-year battle. On October 29, 2021, I lost my hero, my dad to the same prostate cancer after an 11-year battle. Through these journeys, this is my story of what I’ve learned about caretaking, as my mom, sister, brother and myself stepped up to perform the ultimate act of love, which is caretaking.
…is managing 42 pills a day, in different time increments, setting pill “alarms”, learning to use medicine reminder apps on your phone, managing the side effects for each pill, understanding when to take with food and when without, having pill containers by the bed, by the chair, by the sink, in the fridge. It is constant guesswork on which pill worked, which did not. Even on the “good” days, the pills are the constant reminder that indeed, the illness is still present with us.
…it is becoming a walking Dictionary of cancer terms. It is knowing the difference between radiation and chemotherapy. It is knowing when to google the words “metastasize” and “aggressive” and “Stage 4” and when not to google “life expectancy.”
…it is going to bed after a long day and saying “I don’t know if I can do one more day of this” and waking up and repeating the phrase “I can do hard things” over and over again.
…it is ordering every product on Amazon that you can think of that might help your loved one. It is finding the highest rated barf bags, the tool that will make showering easier, the essential oils that will bring inner peace and calm, the lotion that has soothing effects, the ice pack that comes in just the right size for a hard-to-treat spot, and the warmest, fuzziest blanket on the market.
…it is asking your loved one over and over “What sounds good to eat?” It is secretly taking your food to another room and eating alone because your loved one is feeling nauseous. It is baking their favorite dessert or meal in hopes that this just might be the “trick” to turning a bad day around.
…it is having hard conversations about wills, estate planning, funerals, life insurance and financials because you know these conversations must be had….but you also know that these are the worst conversations you’ve ever had in your entire life.
…it is giving up your own social life, missing out on life’s events, it is saying no to the shopping trip, it is passing on the annual couples getaway, it is knowing that the “FOMO” of your social calendar is nothing compared to the “FOMO” of every single moment, big or small, with your loved one.
…it is watching your loved one fall asleep and staring for two straight hours with tears streaming down your face and asking yourself “How did we get here?”
…it is taking on household chores and responsibilities that were never supposed to be yours. It is learning how to mow the lawn, do laundry, drive the four wheeler, change the air conditioner filter, balance the checkbook, or change the oil….and saying to yourself “I don’t know if I can do this but I simply have no other options available.”
…it is the constant hugs, the texts that only say “Do you know how much I love you?”, the increased use of terms of endearment, the sharing of memories, the neck massages, and holding hands. When words fail, it is the loving touches that sustain you.
…it is experiencing “caregiver brain fog.” This experience takes place when you walk into a grocery store for one thing and walk out without it. It’s forgetting a birthday of a close loved one. It is not knowing whether it is a Monday or a Wednesday. It is completely forgetting that Thanksgiving is around the corner. It is calling a doctor’s office and not knowing what appointment you were supposed to be setting up. It is forgetting that you didn’t eat breakfast or lunch. It is being unable to focus on someone telling a long story, or following along on a new television series. It is your brain shutting down and where time has no relevance.
…it is crying. And, sometimes this means, sobbing and wailing, and sometimes it means the most silent cry that is only on the inside. It is crying at a stoplight. It is crying while picking up a pizza. It is crying in the aisles of a pharmacy. It is crying in the closet in your bedroom. It is crying on the shoulder of a good friend. It is crying at the feet of your grandmother. It is crying yourself to sleep.
…it is feeling sick to your stomach when you walk in a hospital. It is feeling like your legs could crumble underneath you at any given moment. It is not eating or sleeping for days. It is sweating, shaking, vomiting, and restlessness. It is managing your own anxiety or depression. It is sharing none of these things with your loved one because quite simply, there are much bigger problems at hand.
…it is hearing the words “the radiation is working!” and celebrating. It is counting down to the next appointment three months later where you play this game all over again. It is hearing the words “There is nothing else we can do.” And, then it is delivering that news to everyone else who is on this rollercoaster with you.
…it is telling your loved one over and over “I will be okay” and then walking away and saying to yourself “But, I will never be the same.”
…it is writing down all of the details from the day spent going from doctor to doctor. It’s asking them to repeat it so you can get it just right. It is keeping a journal of every appointment, instruction, medicine mentioned, options available, guidelines and timelines. It is calling in every favor owed to you by a doctor, nurse, oncologist, or friend. It is researching the best hospitals, doctors and facilities. It is having a calendar full of appointments and treatments. It is having to make decisions to which you are wholly unqualified. It is a game of guesswork, in which a life depends upon. It is becoming an advocate and an expert.
…it is seeing pain and suffering with your own eyes, and with your heart. It is never being able to completely “unsee” it. It is feeling guilt for every hangnail or broken toe that you’ve complained about. It is not sweating the small stuff – – and learning that most of life up to this very point in time has all been small stuff. It is being grateful for your own body that is healthy, capable, and strong and knowing to never take it for granted again. It is feeling remorse for ever stressing about the extra five pounds you gained. It is feeling empathy on a deeper level than you ever imagined.
…it is feeling two completely opposite emotions at the exact same time, an emotional hurricane. It is running on an empty tank and having it re-filled simultaneously. It is wanting your shift/day/hour/time to be over and walking out the door and turning right back around craving for one more moment. It is time going excruciating slow yet moving at top notch speeds. It is laughing and crying in the same breath. It is wanting it all to end and to never end. It is being completely sleep deprived yet able to stay awake bedside for hours on end. It is knowing what self-care is yet knowing that the only way to take care of oneself is to take care of your loved one.
…It is reinventing, renewing, changing, losing and strengthening friendships. It is that one person who you have not talked to in 20 years who walks through the door, sits down and says “I know what you are going through and I’m here to help.” It is the hospice nurse who has more strength than you will ever have who says “We’re in this together.” It is the neighbor who insists you come over for one cup of coffee. It is the text from an old classmate that says “I heard the news and I just wanted to say….”. It is the in-laws who don’t ask what they can do, they just do. It is the fellow mom who says “I have never wanted to do more carpool in my life for anyone but you.” It is the note received in the mail that says “This sucks and I can’t change this for you, but know that I’m in the trenches with you.” It is accepting the help from your “community” so you can tend to what matters most.
…It is holding on to that tiny strand of hope that says there are better days ahead. It is understanding the phrase “There is a crack in everything, that’s how the light gets in.” It is getting up one more time than we have been knocked down. It is courage that a caretaker wears like a coat of armor into every day. It is a dream that “maybe one day, they’ll be a cure” creeps into your head when the world is telling you “there will never be a cure.” It is the acceptance of the cards we’ve been dealt, the harsh realities of the world. It is believing somewhere very, very deep inside of you that everything is just how it should be, but not as you want it to be. It is the belief that miracles can happen every day – and they do. It is looking for the good, when the bad is right in front of you every single day. It is accepting the utter loss of control in your life. It is the faith that the same loving God who brought you to this will bring you through this.
…Caregiving is being the hands and feet of Jesus. It’s performing tiny little miracles every single day, and knowing that one day, you’ll be able to proudly say “I served well. I loved hard. I gave my everything. And, I’ve lived to tell about it.”