Johnson discusses the challeneges of navigating medication management at home.
Caring for the one you love is incredibly difficult to describe to somebody who has not ever done so. It is overwhelming, hard work, emotionally taxing and can be rewarding. I have been through a tumultuous time as I was and continue, in part, to be my sister’s primary caregiver. Just as with anybody else, I was not prepared for the diagnosis and even less prepared for what the next two years would bring.
No matter what you think the risk of cancer is in your family, whether you think your loved one is sick or not, there is not a way to prepare for hearing that they have cancer. At every turn throughout my sister’s journey, the number of tasks that I was required to do grew. At her sickest, she was taking 36 different medications in a day, attending appointments three days a week and spent more time in a hospital than at home. Of all the things that I struggled with, dosing medications was by far the hardest.
In the beginning, she only had a few: anti-nausea, pain medications, sleeping aids and nutritional supplements. That list was easy to manage because the vitamins were with a meal and she simply had to ask for the rest. As the medication list grew with each hospital stay, I worked on new and better methods to keep track. We used a star chart that told her if it was blue, that meant breakfast. Red was lunch, gold was dinner, green was bedtime and purple was for pain. That became far too confusing for her, so we moved on. Next was the chart method. I wrote out her meds and she would look at a time to know what she needed to take. This, sadly, resulted in missed doses. When she had an accidental overdose and ended up the emergency room, that method came to an end as well.
By this point, she was on far too many medications for them to fit in a pill box, and she was too sick to remember what she was to take, or even what she could take. This was four months into her treatment, and it was at this point that I took full control of her medications and dosing of them all. To some, management of medications may seem like an easy task. The truth is, it is not as easy as opening Tylenol and dosing them. Each drug comes with its own rules. Many of them interact with each other so they can not be taken together, and they all have an incredibly long list of side effects, often meaning more medications to manage those side effects.
When she began to need injections daily, things got even more complicated. She was never hungry after getting them, which meant that the medications she needed to consume with food with had to be taken at a different time. We would rotate where she was getting the shots, but profuse bruising led us to switch to using her legs, which made the pain worse. So that meant another medication to manage the pain that we were causing her by treating her.
After much trial and error, I came up with a system that worked for me. She had five cups that sealed. One got a label for each time in the day that she was to take them. Morning, lunch, dinner and bedtime. She would wake me if she was in pain and PRN medications were dosed and I would give them as her symptoms seemed fit. We ran on this system for nearly a year. While exhausting, it worked. She had no overdoses, never missed a dose and took everything that was prescribed.
The things that helped me the most with becoming a home pharmacist was knowing to ask questions to better understand the medications. It is easy to be overwhelmed in a clinical setting when drug names are being said, scripts are being handed out and you are just trying to make sure you have them all. The hardest, for me, was when she was being discharged. She would always come out of a hospital with so many new drugs, and I would have to relearn her medications and all that went along with them.
For a short while, I did not know what to do, and it would take me days to figure it out how to separate drugs so that she was taking them as she had done inpatient. It was explained to me that keeping the same hospital schedule at home is not important. Figure out what works and do that. Knowing those things helped me to feel more confident in the care that I was giving at home and allowed me the freedom to do what I thought was best.
Handwritten scripts where a huge challenge for me. Doctors may be good at a lot of things, but handwriting is not normally one of them. At her third discharge, her nurse, Kristi, explained the dosage notes that doctors write. QD, BID, TID, QH, PRN and so on. She gave me tricks to remember them, and that knowledge has been indispensable when managing her medications these past two years.
We are very lucky to be at a place now where she can use a pill box. It is filled weekly, and has three slots for each day: morning, lunch and night. I still dose her narcotics, but aside from those, she is now in charge of her own medications. She also has reminders on her phone that tell her it is time to take her medications. That allows for me to focus on other things and not worry about her taking them. It is also easy to track her medications because I can take a quick check of her pill box and know what she is taking and what she isn’t.
All through her treatment, her willingness to take medications has not always been smooth sailing. Being 27, she has often been resistant to things such as anti-anxiety and anti-depressant medications. Medication adherence is a huge challenge with most ill patients, but it is more so true with youth patients. For me, it has been about utilizing her medical team and explaining that taking these medications will make her better. They are helping her as much as the treatments that she is on. As important as medication adherence is for a patient, it is up to them to physically make the choice to take them.
I think medication management is one of the most challenging tasks that any caregiver or patient has to learn and navigate. As with most that goes along with cancer, it is one thing that we do learn. Be patient, give yourself some slack when mistakes are made and just try to remember that you are learning. It just takes time to figure it all out. It is trial and error. It may feel impossible, like it will never happen, but know that it does. It will.