Slaying the Medication Worry

Medication dispense times per day: 7

Total number of pills to give per day: 25

Medications to keep filled on time: 9

Four days of Robert's pills

Four days of Robert’s pills

The consequences of screwing this up: severe (increased and/or prolonged seizures, physically hurt from increased falls, increased memory and balance problems).

Worst case scenario: I don’t even want to think about it.

My number one concern about Robert moving in is, by far, Robert’s medication.  (Keeping the freezer stocked with Rocky Road ice cream is a close second).

I was kind of freaking out about it but a friend asked me, “Don’t you think you can do better than New Home has?”

Good point.

I, at least, won’t make arbitrary changes to his medication schedule so that it fits better with my schedule (a nurse at New Home actually did this when Robert first moved in there with awful consequences).

Making sure I had Robert’s medications lined up properly and in time for move-in was one of the first items to tackle on my checklist.  My hope was that we could use the same pharmacy as New Home so the transition would be seamless.  I knew they delivered and thought that would be helpful.

I called Robert’s current pharmacy only to learn they only work with care facilities.  I asked for advice on how to transfer the prescriptions to a new pharmacy and was told to get new prescriptions written by the doctor and fill at the new pharmacy.

I had already previously filled prescriptions for Robert at a pharmacy near our house which is a familiar pharmacy since my husband uses it.  This was very helpful as they already had Robert in their system with all of his insurance information.

While simultaneously plowing through the other items on the move-in checklist, I called his doctors, New Home and our new pharmacy and asked for information on how to seamlessly transfer his medications.  With each call, I got a new piece of information.

  • Have his GP write brand new prescription orders.
  • Have his GP and neurologist write new prescription orders.
  • The doctors can call the pharmacy with the orders and cut out the “paper” step.

Medications were confirmed with each doctor.

After a few days, there was a follow up call from neurology about the brand name prescriptions Robert is supposed to have.

In the meantime, I called New Home to ask what medications they would still have and how much would be sent with Robert when he moved out.  I wanted to be sure I had a couple of weeks of medication in case the pharmacy couldn’t fill the order immediately.  They assured me I would have at least two weeks of some medications and one month supply of some others.  They sent me a detailed list of what medications and how many I would have for Robert.

Call me crazy, but I was doubtful.

The pharmacy called last week.  Medications were ready for pick up!

This didn’t sound right.  At the time, it was 10 days before Robert moves in and they already have prescriptions ready?

I went to the pharmacy and, sure enough, three of his medications were ready.  One was eye drops which, of course, doesn’t cause me any concern whether I have those or not but the other two were seizure medications.

One of the medications they had filled was the generic version and, after being questioned about why I “preferred” non-generic, I explained it was not a preference at all.  Robert’s neurologist deemed it medically necessary for him to have the brand name only.  The clerk was extremely curious about Robert’s seizures and epilepsy so I took the opportunity to educate him about it and could tell the crowd of people behind me were listening and learning too.

Either that or they were wishing I’d stop being picky about the medications and holding up the line.

I left the generic at the pharmacy for the pharmacist to get clarification from the neurologist.  I only had the Depakote and eye drops but it felt wonderful to bring home the medications!  Before putting them in the cupboard my husband cleared out for just this purpose, I checked the Depakote bottle and peeked inside.

Uh oh.  These pills are grey, not pink.

I looked at the label expecting it to say “Depakote” but it had an “ER” added to it.

I did a quick search on Google and found that ER is sometimes mistaken for DR but these are not interchangeable.  After calling New Home to verify Robert gets the “DR” version and not the “ER” version, I called the pharmacy back.

The clerk who answered the phone told me there wasn’t a difference.  I politely but firmly told her there was.  She put me on hold.

She quickly came back on the phone and told me they would have the correct prescription ready in twenty minutes and asked if any had been taken yet.  Nope, that’s why I’m doing this early.

Working out the bugs without the nasty consequences.

The Depakote was figured out and the next day, other medication was filled with the brand name (Klonopin). I talked to the pharmacy about when the others would be ready.  I jotted down the refill dates on my nifty spreadsheet that I created for the medications (yes, I said “nifty”).  A friend sent me the spreadsheet she uses for her husband’s medications and I added a few columns to mine.

Next up: figuring out how to give Day Program the medications they give Robert through the week. I assumed they didn’t want his pills in a baggie.

The pharmacy told me they would be able to give me a bottle with a medication label and I can fill it with the amount of meds Day Program needs from the monthly supply I get from the pharmacy.  Works for me.

My plan is to put one week of Robert’s medications into a pill container.  He takes so many, it’s actually going to take two large containers to fit them all.  Hubby gave me an idea of how to organize them which works perfectly (the row of 7 days will equal the 7 medication times per day).  Each row will be for one full day.  I labeled them with the medication times so no matter who is giving Robert his meds, the days and times are clearly labeled.  (Clearly may be overstating it since my handwriting is awful).

I am feeling much more in control of the medications and having much less worry about it.

Slaying the medication worry:  Priceless

 

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

8 thoughts on “Slaying the Medication Worry

  1. Profile photo of RichardRichard

    WOW, After 25 pills spread over 7 delivery times in the day what does he do with the other 20 minutes in his day? Excellent way to devise a better plan on keeping track of his meds. And I want to say thank you for keeping me informed of how you have it set up, how meds will be affected if on a holiday (2 more delivery times that are normally given at his day program) or if he’s sick. The more information we can share such as the meds since you are the lead with them and with what I see in the afternoons when he gets home or on the days he’s home and you still need to work the better home experience we can give Robert. But as I’ve stated before, the more communicating we do the lessens the chance for any errors with Robert

    Reply
    • Profile photo of TrishTrish Post author

      Your first line made me laugh! I couldn’t do this without you and appreciate all the good ideas you give me (even though I may reject some of them). :-)

      Reply
  2. Profile photo of CathyCathy

    So impressed. Medications are such a worry with my aunt. Would you mind sharing your spreadsheet. Sometimes I found myself making the three hour round trip to my aunt’s simply to go to the pharmacy. One med needs approval for every refill. After lots of trial and error and miscommunication, I feel a little bit better about it. They can’t be delivered because if her helper isn’t there she could lose them within minutes or feed them to the dog. I keep them locked up. The helper that has been with us the longest knows the combination. It is a continual worry.

    Reply
    • Profile photo of TrishTrish Post author

      Cathy, I’ll share the spreadsheet later tonight. @ejourneys mentioned turning her spreadsheet into a .jpg doc which is a great idea – I’ll do that and then post it. There are so many pieces to worry about with medications, isn’t there? One potential issue I see is that the refill dates are, for the most part, all different. That’s where the spreadsheet will come in handy! :-) Like you said about trial and error, I think it’s always a work in progress.

      Reply
  3. Profile photo of JaneJane

    Trish:

    I have not read the whole blog and will do so when I have more time but I know the worry of this especially when Nicole has a site change and she is taking narcotics.

    Nicole takes her medicine 4 times a day for a total of 14 pills and this doesn’t count her vitamins and the other things she takes prn (as needed)and her continuous infusion which we have to change the pump every other day and the things we have to do associated with this.

    It is confusing making sure that she takes all the correct meds at the correct time and for things like narcotics she doesn’t take them too soon. How Nicole feels will be directly related to if she misses a dose of medications it could have serious consequences.

    You are doing such an awesome job and Robert is so lucky to have such a wonderful sister and caregiver.

    Hugs:o)
    Jane~ mom to Nicole, 18 yo
    VSD: ventricular septal defect
    PFO: patent foramen ovale
    ES: eisenmengers syndrome
    PAH: pulmonary arterial hypertension
    BHJS: benign hypermobility joint syndrome
    GAD/OCD: generalized anxiety disorder/ obsessive compulsive disorder
    “You’re braver that you believe, and stronger than you seem, and smarter than you think.”

    Reply
    • Profile photo of TrishTrish Post author

      Jane, I think you and I are in the exact same boat – the consequences of missing meds can be very serious! No wonder we worry! The spreadsheet made me feel much better. I also felt much better once I verified the new pharmacy has all of the medications Robert needs in their system. Plus, you’re dealing with the pump and all that entails! I think Nicole is pretty darn lucky to have such a wonderful mom! :-)

      Reply
  4. Profile photo of DeniseDenise

    Hi–You’re doing awesome!! It is scary and that’s why you are taking such a logical, organized approach.

    You are the expert at Robert–and that puts you way ahead of the game.

    Thanks for keeping us posted.

    Reply
  5. Profile photo of JoJo

    Trish,

    Impressive but not surprising, not coming from you. You ARE highly organized whether by nature or necessity the fact is that you are.

    You remind me of a comment I frequently hear, “I could never do what you ate doing…”; to which I’ve learned to answer “yes you could, if you really had to, if there wasn’t any other choice… but trust me you don’t want to be in this position.”

    Jane’s signature tag applies to you too, “you are braver than you believe, stronger than you seem, and smarter than you think” Robert has a very cool sister. I’d call HER priceless!

    Reply

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