As a dementia or Alzheimers caregiver, one of the most frustrating things when you start taking care is figuring our what medication our loved ones are taking. Tips and ideas for how to find out what treatments they are given and what pills they are taking!
Before I get started, I just want to say that this process might become super frustrating and hard to accomplish.
I know when I started I was all happy, thinking I would just go with her to one doctor's appointment and get a handy dandy list of everything that I could keep in her medical folder. My experience was nothing like that!
It took about 3 months and a ton of leg work to find everything that she was taking, who prescribed it and what it was for (and that is without even trying to see if they had any interference with each other!)
Get HIPPA Waivers (If You Can)
The HIPPA privacy rule bars doctors from sharing information about a patient unless they sign a specific form that authorizes them to you about your Mom's conditions or medicines.
Getting her to sign this waiver can be a little tricky. I know when I started my Mom thought that she could still manage everything and fought me a little bit on giving her doctors the waivers.
My recommendation to you is to try and keep trying every time you are at a doctors office or on the phone (they will ask to speak to your loved one to get approval.)
If you don't have this approval you will have to have your loved one with you or on the phone with you every time you need to check something. That gets old really fast!
Start With Her Primary Care Doctor
In theory your Mom's primary doctor will have a list of all the medicines that she has been prescribed. I found this NOT to be case with Mom's previous primary.
She had a short list of medications, but no doses and and it was for sure not a comprehensive list of them all. Get what the doctor has, but take it with a grain of salt.
Next ask for the names and contact information for any specialists your Mom may have been sent to see. In my Mom's case this was a Rheumatologist, Endocrinologist and Neurologist. Look up what they are specialized in so you can get a hint of which medicines might go with which doctors.
Visit Her Pharmacy
Hopefully your Mom has gotten all her prescriptions filled at a single pharmacy, if not, check back with the Primary to see if they have any other place on file.
Request a printout of the last year's worth of prescriptions that have been filled for your Mom.
These lists are GOLD! They are usually oldest to newest and can show how the prescriptions have changed. For example, my Mom had progressively been getting higher and higher doses of thyroid medicine (more about that later!)
Check What Is On Her Counter
The weirdest thing to me is that doctors and the pharmacy kept saying to check which medications Mom was taking by looking at her counter… arggg.
She had multiple pill bottles for the same medications on her counter, different doses and then some that seemed to be empty and come to find out some that were missing.
Note to doctors… I think that when memory loss and the ability to reason start going down, we should not put the care of medication in the hands of our loved ones.
Visit Her Specialists
Next start making the round of her specialist doctors and ask them what she is taking and why she is taking them.
One of the pills Mom was taking was for a short term condition she had once and years later was still being medicated for.
Here is where your Mom may start getting grumpy. At this point my Mom was becoming embarrassed that I was asking so many questions and that she couldn't manage the directions that she had been given.
Honestly, based on all the medications, times and requirements (take with food, take on an empty stomach, take 1 hour before you take all the other ones, etc.) it was hard for me to keep track of it all and I am not losing my memory!
Write It All Down On A Medicine List Form
As I was doing all this, I decided to make myself a handy-dandy printable medicine list form. This was honestly a lifesaver for keeping track of all the doses and requirements.
Go Back To Primary Care Physician
If your Mom is taking a lot of different medicines, it is possible (probable) that no one has taken a look at them in all their entirety in a long time.
When I took the list back to Mom's primary care doctor she suggested that we get lab work and visit an Endocrinologist to see what her blood levels looked like.
Filling Her Prescriptions
At this point I started taking over the filling of all Mom's prescriptions.
While I am grumpy with the doctors for not being more on top of all this, I am to blame too! I thought that she was picking up and managing all her meds when she was living alone, but we found out afterwards that this was WAY beyond her capabilities.
Think about this. You have to get the prescription at a doctor, drive to the pharmacy, pick it up, maybe replace an old dose, and then remember to take it everyday with all the restrictions noted.
By the time I took over Mom was honestly way beyond this point of doing it herself.
What To Watch Out For
I got my Mom a new Primary care doctor who is AWESOME! We are a team and she is happy that I am there to help keep Mom on track.
That said, Mom started to have more and more memory loss, she was more lethargic and getting meaner by the day.
Come to find out she had been taking very few of her Thyroid pills, hence the higher and higher dose. When we got her back on track she was taking a HUGE dose and it was messing her up even more than she needed to be.
As a caregiver, we have to watch for when medicine starts getting taken regularly that it is not too much for their weight or what they need to take!
Finding Out Your Mom's Medicines Wrapup
First off, I am so proud of you for taking this on! It must mean that you love your Mom very much, because taking care of this will consume a large amount of time that could be used doing something way more fun.
But it is so important and once you have a full list of her doctors and medicine, you will feel so much more in control and able to make sure she is getting the best care possible!
- Get HIPPA Waivers If You Can
- Start with her primary care doctor - Get a list of all the medicines she knows about and the names and contact info for any specialists she may have referred your Mom to.
- Visit Her Pharmacy - Request a list of the medicines she has taken for the previous year.
- Check what is on her counter - Match this to the list from the pharmacy and possibly the doctor.
- Visit her specialists - Ask what they have prescribed and why she is taking it.
- Write everything down on a Medicine List form.
- Go back to her primary care physician. Check and make sure that all the medicines are okay to work together. She may refer you to an Endocrinologist.
- Filling her prescriptions. If she lets you, take over the management of her prescriptions.
- Watch out for the doses once she is taking her medicine more regularly. It could be too high when taken regularly.