For those of us caring for someone who has recently experienced a stroke, we are often sent home with many new medications, changes to previous prescriptions, and so many questions.
- Does my loved one really need to take THIS MANY pills?
- What are all of these pills for?
- What am I supposed to do if he/she is refusing to take them?
- What if he/she is having difficulty swallowing these?
- I am noticing what I think are severe side effects from this medication, now what?
I am not only a caregiver for my own husband who had a massive brain bleed 7 years ago, but I am also a prescriber of medications for the elderly at work. I have witnessed 1st hand how confusing and overwhelming the medication management portion of caregiving can be.
Often, patients are sent home with more than 5 prescription medications after hospitalization, increasing the odds of medications interactions or errors. This is referred to as “polypharmacy” and has become a concern for the CDC over the last decade:
https://www.cdc.gov/nchs/products/databriefs/db347.htm
So how do you, a person who is NOT a medical professional, gain control and knowledge to provide the best care and outcomes for the person you are involved in caring for? I will give you 3 easy places to start.
Here is what I often hear from caregivers:
- Would the doctor prescribe something my spouse doesn’t need?
- Shouldn’t the doctor’s know my mother’s medical history and if a medication might interact?
- Who am I to question the professionals?
- I don’t want to be rude.
So I will let you in on a little secret…any doctor or prescriber who is confident in what they do would welcome input from the caregiver! ALWAYS! You spend the most amount of time with this person. You have known them longer than we have. Please, speak up.
The healthcare system is overburdened, overwhelmed and understaffed. There is no way that any medical professional can remember everyone’s medical history. And while we would all love to make sure we are talking to each other about each patient and what we prescribe, it is just not possible.
Without being overly-dramatic here, it’s important for patients and caregivers to be active participants in every area of their own healthcare. It is the only way to have true peace of mind and confidence in the choices you are making. Medication errors, including people taking medications as they are prescribed, has caused an increasing number of deaths over the years:
https://www.cnbc.com/2018/02/22/medical-errors-third-leading-cause-of-death-in-america.html
Another thing to consider is that if you or the person you are caring for has multiple physicians prescribing medications and you are having prescriptions filled at different pharmacies, there is an increased likelihood of drug interactions that might be missed and could be dangerous, even life-threatening.
Now that you understand why I am so passionate about this topic, here are 3 things that you can do to maintain a good understanding and excellent teamwork with your providers to prevent any avoidable illness or injury related to medications.
Track Medications
Keeping track of what medications someone is taking, what they are specifically prescribed for, when they started taking them (month, date, year) and any noted side effects will help you to better understand what is working and what may be doing more harm than good.
There are many free printable/downloadable medication trackers on the internet. I have included the link to a FREE MEDICATION TRACKER here:
https://cheerful-teacher-940.ck.page/efb03f9afc
By keeping accurate records, it is easier for you to provide the prescriber with solid data in the very short window you get to discuss things during your visit.
For example:
“See here Dr. Jones? When my mom started this medication in February 2022, she started sleeping all the time. Now she is too tired to eat and has lost weight”
Then you can discuss how necessary the medication is or if it can be administered at bedtime so she is able to get through the fatigue side effect when she is sleeping anyway.
Stay consistent
Try to have all of your or your loved one’s prescriptions filled at the same pharmacy. Establish a relationship with your pharmacist. Pharmacists are the brains of healthcare as far as I’m concerned. Even as a prescriber myself, if I’m stumped with symptom management for a patient, I will call a trusted pharmacist.
Here’s the thing, if you are always going to the same pharmacy and have established a relationship with the staff, they are often an invaluable resource for notifying you if something may cause an allergic reaction because it’s in the same drug family as something on an allergy list. Also, if you are purchasing and over the counter medication, your pharmacist can review your medication list in a few minutes to ensure you will not have an adverse reaction.
Consider Goals of Care
As a prescriber, a daughter and a caregiver/spouse to my own husband, goals of care is always an important topic for discussion when it comes to medications. Do the benefits and burden of additional medications outweigh the risks?
Here’s what I mean:
- If I have a patient who is 98 years old, am I really worried about their cholesterol and its long-term effects on potential heart disease?
- The patient who has end-stage dementia and won’t eat after taking medications because of nausea might no longer be benefiting from medications that were designed for EARLY dementia.
- Some patients may be taking medication for anxiety, but it’s keeping them lethargic throughout the day and awake all night. Is that the best medication for them?
I cannot answer these questions for anyone, which is why I always prefer to enlist the patient and/or their caregiver in deciding to start or continue to stop a medication. These decisions should be based on an individual’s values, goals and beliefs, not mine.
Here is a great link to understanding more about “goals of care” conversations:
https://acpdecisions.org/goals-of-care-conversations-a-best-practice-step-by-step-approach/
This is meant to be a starting point for you in considering how you may want to decrease a medication burden for yourself or someone you are caring for. As a prescriber, I will tell you I would never recommend starting, stopping or changing any medication without speaking to the prescriber directly, as many medications can be complicated and dangerous to change without professional direction.
If you feel you do not have a relationship with your provider or you are unable to get an appointment in a reasonable amount of time, request to be seen by their NP (nurse practitioner) or PA (physician’s assistant) who may have greater availability to meet with you.
Again, your best course of action is to track all medications, including over the counter, supplements, topical medications, inhaled medications, ALL OF THEM. Have all of your concerns written down for the appointment so you don’t forget. Consult with your pharmacist prior to the appointment if needed to get some insight and recommendations to take back to your provider.
Most of all, never forget the patient and their caregiver are an essential part of the healthcare team. At the end of the day, you are the ones who will be living with the outcomes of any and all decisions being made. Don’t be afraid to educate yourself and advocate. Your voice matters.
