Managing Medications: how do I keep track of it all?
April 22, 2020 4:12 PM   Subscribe

My mother has brain cancer, and she's taking about 20 different medications right now. Today her primary care doc indicated that she doesn't think that my father is up to keeping track of all the medications, and she thinks that I should take over. I am also not really up to keeping track of my mother's medications, but that doesn't matter, because someone needs to do it, and it looks like that someone is me. Please help me come up with a system so I don't fuck this up.

My mother is taking a whole bunch of medications, prescribed by several different doctors, on complicated and differing schedules. Some need to be taken every morning. Some need to be taken every evening at dinner time. Some need to be taken in both the morning and the evening. There's one that needs to be taken four times a day. One needs to be taken two hours after dinner, and there's one that needs to be taken an hour before she takes that one. There are also some that need to be taken three days a week. Finally, there are sometimes changes in the medication schedule, which often need to be implemented immediately. Today my father emailed something to my mom's primary care doc which apparently indicated that he misunderstood an instruction and has been giving my mom one of the medications incorrectly. The doctor suggested that my father is suffering from "caregiver burnout" and that I should take over managing the meds.

So here's the thing: I have ADHD and pretty significant executive function challenges. It is increasingly clear that I get them from my father, and I think I'm in better shape to handle this than he is, but I am not a person who really should be handling a complex medication schedule while also dealing with a full-time job, my own caregiver burnout issues, and the general shit-show that we are all coping with now. I need an ironclad system to make this work, and I have no idea what that would look like.

I have one of those AM/ PM pill dispenser things, and I have separate pill dispensers for the before-bed pills and the hour-before-that pill. I don't have a good system for fishing out medications when there's a mid-week change, and I don't know what's happening with the four-times-a-day meds. (Right now, all the meds are in pill form, but there was a liquid that got discontinued last week. My father's system for that one was he just remembered to give it to her, which is not going to work for me. I need a system.) Mostly, I need to figure out how to keep track of what should go in the dispensers, plus I need a system to keep track of anything that doesn't go in one of the dispensers. Is this just a Word document with a list of medications, each one with the schedule? A daily calendar, with the medications listed at the time(s) they should be given? How do organized people do this kind of thing?
posted by ArbitraryAndCapricious to Health & Fitness (18 answers total) 5 users marked this as a favorite
We make a calendar type grid with each medication and when it needs to be taken, and we check it off when it's given. If you search "free medication chart" you'll see lots of options. If you have meds where specific timing matters, I'd set an alarm too.
posted by peanut_mcgillicuty at 4:25 PM on April 22, 2020 [5 favorites]

I'm haven't had to do this, so I'm just spitballing here: it sounds like you could all of it into maybe five 'medicine times' per day, e.g. morning, mid-day, dinnertime, dinnertime+1hour, dinnertime+2 hours. You could make up a grid with those times as columns and days of the week as rows (or vice-versa, I guess). Populate the grid with all the various meds, and set five daily reminders on your phone to check the chart. There are physical pill organizers you can use this way, but it looks like they are mostly limited to four time slots per day. Also, filling the organizer ahead of time conflicts with your need to rapidly implement changes.

Of course an app would also seem like a natural solution. Probably easier than a spreadsheet.

Sorry, this sounds hard on multiple levels.
posted by jon1270 at 4:43 PM on April 22, 2020

I've had 10-12 meds on the go at one time. The main thing I used (and was given by the medical team once I started taking so many pills) was a big weekly pill organizer with each day removable and four time slots in each day, something like this. (Currently, I only take pills once a day, so I have a smaller pill thing. But that's what I started with when I was at max pills.) I had an alarm on my phone to take my meds.

I fill the pill organizer by taking all the med bottles out of the giant ziploc bag they live in and dumping them on the kitchen table; I then go through them one at a time, and count out the correct number in the appropriate slots, then close them up and put them back in the bag. My pills are all sorted out once all the meds are back in the bag. In this way, there's one time a week I'm actively paying attention to what meds and how many I need to take, and the rest of the time I'm just swallowing pills with no thought needed.

Other thoughts:
- I currently have one med where my dosage includes a half pill; eg if a pill is 100mg my dose is 150mg. Instead of treating it like one and a half pills, I have a separate container with the split pills; every once in a while I watch an episode of Schitt's Creek and split a month's worth of pills into the container. So when I'm counting out pills, I treat it like just a different kind of pill.
- One needs to be taken two hours after dinner, and there's one that needs to be taken an hour before she takes that one. So one needs to be taken one hour after dinner, and another one two hours after. Can you get a timer, ideally a dedicated digital timer like on cooking shows, and set it for an hour? Start it when you eat dinner -- maybe it lives at your place on the dinner table -- and then give the one hour after dinner pill, then restart it for a second hour.
- If for some reason I'm missing pills when I count them out because I haven't got a refill yet, I write a little note and shove it in the pill slot for that day (in every day where it's missing). When I get the refill, I can fill the slots and take the notes away.
- I noted I take pills once a day. I actually was prescribed one of the pills to be taken in the evening, while the rest are daily (or M/W/F) in the morning. After I kept forgetting it, I talked with my doctor who agreed I could move it to the morning. Ask your mom's doctors, and if you feel comfortable mention your ADHD - there might be modifications they can make. The fewer different times she has to take meds, the better; the more they are at absolute times (rather than an hour before x, an hour after y), the better.
- My system for changing meds is that as soon as I hear that the meds have to change, I go and fish out (or add) all the meds immediately. If there's a pattern as to when your mom's docs change, try to work around that -- for instance, if they only change meds on weekdays, then refill the pill thingy Friday night so at least two days go by before you need to change. If they mostly change them on Wednesdays, then fill the pill thingy Wednesday night.
- You might consider changing or adding mealtimes if it makes things easier; if some pills are breakfast and dinner, and some pills are morning and evening 12 hours apart, then you could simplify by having breakfast be 7 AM and dinner 7 PM -- now there's two times to take pills instead of four. (Or breakfast at 9 AM, dinner at 6 PM and a snack/dessert at 9 PM -- often "with dinner" actually means "with some food", check with the doc.)
- I never had meds this complicated, but consider a checklist. That's what people like airline pilots and NASA use when there's a lot of complicated steps and they all need to be done in the right order.
posted by Homeboy Trouble at 4:50 PM on April 22, 2020 [5 favorites]

There's a pharmacy service called pillpack that supplies meds in separate packets labeled with the date and time the med is supposed to be taken. That might be worth trying so someone else would set it up for you.

I'm a hospital pharmacist so I spend a lot of time looking at this sort of thing. Everybody has a hard time with this so don't feel like you're disorganized for having trouble. Literally everybody has trouble. A lot of patients at the place where I work have a family member who helps with meds. A calendar type grid like peanut_mcgillicuty describes is a really common solution. They also sell huge pill dispenser things so if you don't have room for all the time slots you need in the one you have you could get a bigger one.

The app also sounds great.

Just know that if you get a good list of her meds together you will be ahead of the game. It's really nice to have it organized so that in the event she has to go to the hospital you're not struggling to remember. ADHD people might have an advantage here actually - we need things written down so we make a written list!
posted by selfmedicating at 4:50 PM on April 22, 2020 [12 favorites]

When my grandmother was in hospice care, we bought one of those big whiteboards that they have in many hospital rooms and hung it on the wall, and drew her medication schedule out on it. My mother, aunt and I were sharing caring duties, so we always knew with a glance at the board if Grandma had had her medications. We also invested in those caps for pill bottles that tell you when they were last opened (like these:timer caps). We used the pill organizers, but for the ones that had to be given as needed, or before meals, etc., the pill timers helped because Grandma often couldn't remember if she'd taken it, so this helped us stop overdoses, or make certain she got what she needed.
posted by backwards compatible at 4:51 PM on April 22, 2020 [4 favorites]

Another vote for trying an app. I use Medisafe and find it meets all my needs, including alarms to remind me to take easy-to-forget mid-day doses, notifications when my supply of a prescription is running low and needs refilling, and even a status report on how well I did at keeping to schedule through the past week. Combined with am/pm pill boxes that I prepare two weeks in advance, it's really helped me stay on track with my 15+ meds.
posted by peakcomm at 5:02 PM on April 22, 2020 [1 favorite]

Before you get excited about pillpack, which I thought would be the solution to all my brain cancer meds problems, know that that don’t do most chemo meds. Also they only send out once a month so they’re not great for frequently-adjusted meds.
posted by mskyle at 5:27 PM on April 22, 2020 [2 favorites]

If it’s accessible, a local pharmacy that will provide a medset (prepackaged medications sorted by time) might be invaluable. Even if they aren’t able to package everything, getting most of it in a really easy format will help. Combine that with a grid check off calendar and phone alarms and you are golden.
posted by charmcityblues at 5:49 PM on April 22, 2020 [3 favorites]

It took a lot of paper but my wife and I printed a page a day for my dad's meds, with a row for each medication and a column for each possible time. Write the day at the top, check off each medicine as it's dosed, file the completed sheets in date order for reference. If his dosing changed we'd update the spreadsheet and print new pages. My mom kind of hated it because she thought we were micromanaging her, but then she realized we were using it to communicate with each other (and, for that matter, any other caregivers who might have been involved on any given day). We took copies to his appointments, and I swear more than one of his doctors looked at everything and made adjustments after seeing it all written down like that. "Oh, he doesn't need to take X twice a day if he's also taking Y," that sort of thing.

What my mom didn't need to know was we'd come up with the format when dosing our cat, who had to have all his pills crushed up and mixed up into a food slurry, given via syringe. When you'd crushed everything up you had no visual indicator of pill count, etc. "Wait, did I get X?" was a real concern. Checking it off as it went into the mix solved that problem.
posted by fedward at 6:25 PM on April 22, 2020 [4 favorites]

I make a paper grid for each medication with boxes for dose amount and timing. Then I put check marks in the boxes when I take the medicine(s). I have ADHD as well and it can be frightening to wonder if I have taken some medicines or not. I find it helps to make the boxes big enough to write in the actual time I took it, or MISS if I realized that I missed it. This is because I do get off track sometimes (life happens), I don’t beat myself up about it, but I also don’t want to take some things too close together.

I (try to) set alarms for each med time, and then check all the lists to see what is in that time spot.
posted by bilabial at 6:46 PM on April 22, 2020

I printed labels with what meds to take in the morning and what to take in the evening and put them on the AM/PM box. I used to have a printed list and use an app but I ignored it so often or forgot that it was just more static noise. I would use several brightly coloured pill boxes and label them brightly and just work on which time of the day with a simple phone alarm.

Once a week, I pull out the giant box of meds and refill all the different pill boxes and double-check any changes in meds. It takes about 30minutes because I get distracted and there are a lot of meds. More effort than that is way too much focus. A calendar or tracking app was way too much effort for me.
posted by dorothyisunderwood at 6:52 PM on April 22, 2020

Ask the pharmacy to put them in those blister packs. You’d get 4 packs, a week each, for one month’s worth. They had to do this for a family member of mine.
posted by Klaxon Aoooogah at 7:18 PM on April 22, 2020

i had to do this for my dad, and I made a table in Excel. I also used a four slot per day pill organizer. The nice thing about the Excel file is that it was easy to change as the situation changed. Also, one of the the most useful things for the medical staff (and me) was bringing a printout of all the meds and their schedules, especially when the meds came from multiple doctors.
posted by Gneisskate at 7:30 PM on April 22, 2020

IANYOncologist. Things I have done for my patients previously that have worked well:
- Having pharmacy make blister packs (as Klaxon Aoooogah) described
- Having patients enroll in a service like PillPack
- Sorting pills for patients in clinic
- Taking a picture of what the combination of pills looks like for time of day (so that there is a visual reference for what should be taken and/or what should be sorted into a 4 slot pill organizer) since patients often say "I take the blue one" and I couldn't possibly know what the pills look like.

Added level of difficulty: if there is any type of chemotherapy medication in the mix of pills that your parent takes, those are often meant to be kept in their original bottles and handled a specific way. You will want to check with the oncology pharmacist about how those pills should be handled.

There are some home health companies that will offer med box management and can help with a lot of this. Her oncologist or her primary care provider should be able to order this if they were would be amenable.

Also going to MeMail you about some other cancer-specific suggestions.
posted by honeybee413 at 8:00 PM on April 22, 2020 [3 favorites]

I have years of experience managing complex medication regimens for people at home. You can do this! My suggestions:

1. Buy a MedCenter monthly medication organizer. I happen to like the low profile one best but the company has several to choose from, including one that integrates with a cell phone, and others that come with a reminder watch or clock.

The advantages of these organizers cannot be overstated.

- First of all, it's so much more efficient to do this on a monthly instead of weekly basis.

- By setting each day's med box to green or red you can see at a glance which boxes are filled correctly and which need pills. Green for good to go, red for not ready - empty or needing pills to be added.

- Because the boxes are dated you can easily figure out which box to go to when changes need to be made. The dates also makes it easier to tell which day doses might have been missed, if that's an issue.

- There are 4 compartments for each day, and they're big enough to accommodate almost any regimen.

- If you happen to run out of a particular pill as you're filling the boxes you can slip a little note in indicating what's missing from there on out, set the boxes to red, and come back later to add the missing pills and turn the boxes so the green side is facing up.

Pro tip: When I am refilling the boxes I lay them all out open on a table in order, starting with the next day that needs to be filled. If it's the 23rd I start with the 24th, etc. That way, if I run out of something it will happen as late in the cycle as possible.

2. Buy a set of long tweezers, the kind people use for aquariums and such. When a pill inevitably falls in the wrong box you'll be able to easily fish it out (hah!) and put it in its rightful spot.

3. Make 2 lists of medications in table form and print them out. Keep these lists current:

- On one list put the meds in alphabetical order, with the dosage, the dosing instructions, the prescriber, and the reason it's taken. This is the list you'll use when you run out of something so you'll know who to call for a refill or if you have a question about it. You might include both the generic and trade names for each drug on this list since that can come in handy. Oh, and whether it's a prescription drug or over the counter.

- Make a second list with the meds organized according to the schedule by which they're taken. Each time - Morning, Lunch, Dinner, and Bedtime - will have its own little list of meds. You don't need to include every detail on this list, just the names of the meds. It's the one you'll use when you're filling the boxes. Make whatever notes on this list that will be helpful to you.

- Some people like to take pictures of the pills and include them on one or both of these lists. That's a little more work and I personally don't find it worth it but ymmv. (Recognize that the pills might look different from one prescription refill to another....)

- When your mom goes to the doctor (or heaven forbid the ER) she should bring these med lists with her, so make extra copies to keep in a "go bag."

4. Keep the pill bottles organized.

- All the current meds go in a special box or on a tray that you can pull out when needed. Use up the pills in the order they were dispensed and don't mix even the same meds in the bottles since there can sometimes be drug recalls. Keep a pill cutter in the box, along with your tweezers. (The ideal box is broad and flat with low sides, like the ones that cases of seltzer and such are packed in.)

- Meds that are on hold go in a big ziplock bag, labeled "Not Taking" or something. Put the bag safely in a different spot from the current meds.

- As needed ("prn") medications go in their own spot. At the bedside, in a cabinet, whatever. Your parents should keep a little notebook of when the prn meds are taken since many of them have limits on how often they can be taken.

- All expired or unneeded meds go in the garbage. I mean, expired by years, not months.

5. If you need help getting started, you can ask the pharmacist to print you a list of all the meds that have been dispensed in the past 6 months.

6. Keep the medication organizer in a relatively cool, dry spot.

As I said in the beginning.... You can do this!!

Once you have things set up, this will be a breeze (well, almost) and it's possible even your dad could handle it or you could do it together once a month.

Good luck!
posted by 6thsense at 3:22 AM on April 23, 2020 [2 favorites]

I struggled with my own med organization and I think about the subject often. PM me if I can help, I love making instruction guides and would be happy to help troubleshoot along the way. My suggestion is to make your own customized pill box with labels.

1) Calculate each day's medication dosing by hand, per dose, for the entire week. For example Monday might be:
- 8 am - X medication 15mg & Y Medication 10mg
- 10 am - Z medication 5 mg (dose 1/4)
- 12 pm - Z medication 5 mg (dose 2/4)
- 4 pm - Z medication 5mg (3/4)
- 6 pm - Z medication 5 mg (4/4) & A medication 30mg
- 9 pm - B medication 20 mg
Repeat for the entire week.

2) What is the highest number of doses in a single day of the week? 6? 8? Let's call this number XX. This will be valuable info for buying the right organizer box.

3) Once you know the highest number of doses in any given day, buy a clear organizer box. It needs to be at least 7 cells wide by XX cells long. (terms like bead organizer or fishing equipment organizer will be helpful in your search). It's probably going to need to be about 12"x18" or so, maybe a bit smaller, but expect that it's going to be a big box. The columns will be your 'days', organized however makes sense for you, I do Sun-Sat. The rows will be your dosings divided by time of administration.

4) When you get the box, cut up small pieces of paper slightly smaller than the lid of each cell, one for each. Write on the piece of paper EXACTLY the information you wrote down in step 1, one for each dosing per day. Ex - "Monday - 10 am - Z medication 5 mg (dose 1/4)". Tape the paper to the lid so that you can see from outside of the box exactly what the dosing is in that cell. Repeat for every single dosing, one per cell. This will be your bible for the weeks to come about how to organize the pills.

5) Each Sunday, spend an hour or so meticulously doling out the medication from the original bottles into the organization box according to the information on each paper in each cell of the box.
posted by seemoorglass at 5:00 AM on April 23, 2020

My meds are only once a day, but eleven pills. I use a daily pill case and fill the whole week's worth every Sunday. Something I started doing recently is counting my pills before I put them in my mouth -- not "two lithium, two lamictal, three estrogen..." but just "yup, that's eleven." It means that errors on Sundays matter less, because I'll usually catch them when I do that count.

I wonder if you could do something similar. You'd probably have to write out, like, "Breakfast: 9. Lunch: 3..." or whatever, but if you did that you might find that counting three pills at lunchtime was a nice reassurance that you hadn't slipped when you made up the pill case.
posted by nebulawindphone at 5:24 AM on April 23, 2020

Was also going to suggest finding a pharmacy that offers the "pill pack" service. It's really worth calling around for this. There may even be local pharmacies that do it if you prefer to do it that way.
posted by nosila at 2:13 PM on April 23, 2020

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