How to Stay Organized as a Millennial Caregiver
The life of a millennial caregiver can be chaotic. You're balancing your parent's needs (or other family member's needs) with your own life. You're just becoming a fully formed person. Let's face it-- for most millennials your early twenties are just an extension of childhood. Throughout your twenties you're just learning through trial and error how to live and support yourself on your own.
I spent the early months of my caregiving career in chaos. Papers were everywhere, passwords were missing, I was scrambling.
And then I made the "Oh, Shit" binder. The binder has gone by many other names including "FML", "What is Going on Right Now", and "Am I Mature Enough to Handle This?". I use my label maker and dividers to keep it super organized. It lives tucked away in the back of a closet for when I need it (frequently) and isn't in my face for when I just want to live my life.
Below is a summary of the dividers. I also have a digital version of the binder. Again, it's tucked away in the files of my computer so I don't have to stare at it on my desktop. Please note that I'm by no means a legal expert but this is just what I've learned in the last few years. I hope it helps some of you. Please note that there are different forms in different states so please check with an elder law attorney on what you need.
1. Durable Power of Attorney. This is the document that you will use ALL THE TIME. I feel like I use it more than my own ID. A Durable Power of Attorney is when one person (your parent, grandparent, etc.) authorizes you to engage in any legal business on their behalf. In most states this includes health care directives. If your parent is like mine and has an incurable disease, you want to make sure you secure a Durable Power of Attorney vs. regular POA. This ensures you'll be able to have legal control after your parent becomes incapacitated. You can read more about this at LegalZoom.
This document should really be enforced prior to any symptoms or diagnosis, so you are fully prepared if and when the disease shows up. It was difficult for me to have my mom sign off on this when she was unmedicated because she was truly out of her mind. She didn't think she needed assistance. It was only when she was medicated when she was able to sign off. Again, if you have mental illness or any sort of dementia in your family, I highly suggest you do this sooner rather than later. You can find this document online and it will need to be notarized.
No medication or financial institute will speak to you about your parent if you do not have the Durable Power of Attorney, so it's crucial to your role as caregiver. You'll find you'll need this to discuss apartment leases, to close inactive accounts including phone and internet provider accounts, to move your parent into a skilled nursing facilities, and on and on.
2. Finances. The California Durable Power of Attorney will cover a majority of finances but you may also want to set up a living trust for them. I use a Google Drive to keep track of my mother's finances. I record what I buy for her and when. It's important that this is separate from your own checking or savings account. Toothpaste, meals, medical bills and on and on. Again, it's important that you know all passwords and have access to accounts early on in dementia because you'll be in crisis mode when your memory impaired parent accidentally spends their money on ridiculous items that they keep losing (trust me). I also shared this document with my brother and husband so we all have access to it.
3. Medical Records. This is a tricky one because medical documents are often scattered throughout different hospitals and clinics. Also, because of the HIPAA Privacy Rule, it'll be difficult to get digital copies of most medical records. In order to get our Long Term Care Insurance claim approved (I'll talk about this next), we needed lots and lots of medical documentation to prove that my mother had severe cognitive impairment. Keep everything.
You'll also want an Advance Health Care Directive in California so that you can make medical decisions for your parent and that they can state their health care wishes. This is a form that I luckily haven't had to use yet, but it's there in case.
4. Long Term Care Insurance. I'm so, so grateful to the doctor who suggested we get Long Term Care insurance for my mom before we began the HD testing process. At the time, we knew she had a 50/50 chance of inheriting the disease from her mother (my grandmother). We weren't sure what was going on. If you have any dementia in your family, get LTC insurance. Hopefully you never have to use it, but it's there in worst case scenario situations.
I will get into my grievances with LTC insurance companies more in the future, but know that it's their job to stall or deny the claim in any way possible. Long term care is insanely expensive and they'll want to find any caveat to deny you. I know, this seems crazy. I was super naive when we first applied and was shocked when our claim was continuously denied. Not only are you dealing with the emotional aspect of putting your loved one in an assisted living facility, but it's also financially overwhelming without insurance. Why wouldn't these people want to help you?! You'll find throughout this process that while there are many people who are helpful and kind, there are just as many who don't give a shit about you. Tough luck.
Make sure you understand your policy. We also used a LTC Insurance broker in helping us find quality plans. I would recommend this because they'll explain every little detail to you. And, trust me, there are a lot of details.
5. Health insurance. When any sort of dementia sets in, it leaves a person unable to work and generate income. There are thankfully all types of government programs including Medi-Cal (Medicaid in California) that can provide coverage. This all still boggles my mind and involves more hoops to jump through than traditional insurance. I'm still learning all the policies. It's a process.
6. Taxes. We found out recently that there was a whole chunk of years where my mom didn't file any taxes. This is another example of all of the fun things that pop out of nowhere when you're a caregiver. Because so much time had passed, we were also responsible for loads of late penalties. My brother was able to write the IRS a letter to remove and/or reduce the penalties and, although it took months, it actually was approved! The world isn't all bad. Win!
7. Long Term Care Facility Living Agreements and/or Apartment Leases. Keep all of these so you are able to refer to them. You'll need to learn all of the policies and procedures for where your loved one lives now. And, due to the nature of the beast, you'll sometimes have grievances and need to back it up.
Again, I am by no means a legal expert and the necessary legal documents vary state to state. If you have any additional suggestions on how to stay organized, please, PLEASE leave a comment.