I’m going to throw some shade.
Not all primary care doctors are experts in dementia.
It’s true. Unless they’re specialized in Geriatrics (old people) or Neurology (brain), many don’t receive more than a credit or two in dementia and neurodegenerative diseases.
In addition to that, the healthcare system is so broken that in may circumstances, the doctors won’t be able to have more than 15 or 20 minutes with you. So having no time and the doctor having little expertise in your loved one’s disease will leave you as the advocate caring for your loved disheartened and still pretty clueless.
So what do you do???
Boo, you get prepared and you get educated.
Have the following items in a binder that you take with you to doctors appointments will make you a true advocate for your loved one and GOD FORBID make your life a little easier!
Power of Attorney Paperwork (Activation If Necessary)
This is going to be the most important document that you can get established for your loved one’s portfolio.
Hopefully, your LO was proactive enough to have one done far before you’ve had to start caring for them. If not, don’t judge them. A lot of people have a slight delusion that they’ll live forever or the fear of dying makes people shut down and never talk about it.
If you are in the very early stages of their disease process where they are still able to make their needs and desires known, seek out a local and trusted Elder Law Attorney to draft the documents for you.
As tempting as it may be, I would recommend that you stay away from free services, as some of these may not hold up in court.
In Wisconsin, where I live, in addition to the POA documents, you will need an “Activation Form” as well. Once two doctors have signed off on an additional document that your LO is no longer able to make their own healthcare decisions, only then can you make decisions for your LO. I don’t know how many other states do this, but ask your doctor’s office if you need an additional form to “determine incapacity”.
Most Recently updated Medication List
It will be very helpful to know what meds your LO is on and understand what the benefits and side effects to the drugs are. Depending on the person, they may have a ton of meds or very few, but to those who are the former, they will have what are called “comorbidities”.
Comorbidities are additional sickness that your LO may have, such as a heart condition, cancer, diabetes, or a breathing condition. You’ll want to know your LO’s medical history and the meds that they are currently on so that you can keep track of your LO and their behaviors and moods.
When you’re sitting with the doctor, you can then go over the meds that you think are or are not working. I know for some this can seem a little overboard, but I promise you, the more information you have prepared, the better your time will be at the doctor’s office.
A Behavior Journal
Maybe you’ve heard of this, and maybe you haven’t. Having a running tally of things that have seemed “off” for your loved one will help you remember to give instances to their doc if they ask.
What do you write in said journal? Super basic, but essential for remembering the stuff you need to remember:
- Date
- Time
- Behavior
- Meds Taken that day?
- Any redirection that was helpful
These are going to be crucial in helping to figure out if your LO needs a med adjustment, maybe they are starting to sundown and your records show they’ve been agitated every day at 3:30 for the past two weeks. This is going to help your doctor figure out how best to help you and your LO. The more information you have, the better!
A Binder To Keep Everything In
Your life is complicated enough.
Keep everything in the same place. My opinion is to get a zip up Binder like this bad boy you see HERE. It even has a shoulder strap! I am an ADHD Virgo, so I love to have my shit together, but I need to have systems to do so, otherwise I would leave my head at home if I could.
This is going to keep your life incredibly organized so that if you need to pull out a document BOOM! You have that for them. Oh, you need X form? BOOOOOM!
So what should you keep in this binder?
Everything we’ve already talked about, including:
- Financial Information (Banks are finnicky about POA paperwork sometimes, so keep a copy of EVERYTHING from the bank!)
- Emergency contact information with their History and Physical (H&P)
- Copies of all cards (insurance, VA, Medicare if applicable, Photo ID)
- Anything else you think would be pertinent for you to have at-the-ready.
Overview
If you read through this whole thing and didn’t think “man, I need to get our shit together”, you get a frickin’ cookie.
If you did think that (welcome to the club), the best thing you can do for your life and the life of your LO is to get organized and get educated.
This journey is not for the faint of heart, but you can do it. I believe in you!!
