In the Beginning
After your loved one is diagnosed with dementia or Alzheimer’s, among the most important things to get nailed down immediately are the legal aspects.* Don’t put this off!
The first thing you will need to do is to obtain a durable power of attorney (DPOA) for your loved one, as well as an Advance Health Care Directive [PDF]. The processes, paperwork, and requirements for these instruments vary from state to state, but securing them for medical and financial decisions will be necessary so that you can interact with your loved one’s doctors to make sure they get the proper medications, medical treatment, and (in the later stages of disease) any necessary equipment like hospital beds and wheelchairs.
The urgency in getting these plans in place is because your person with dementia (PwD) needs to be mentally capable to be able to legally consent to, and execute, a DPOA for medical and financial decisions. In some states, such as California, you’ll also need to get this document [PDF] notarized, and your PwD will need to go with you to accomplish this.
Once you have a DPOA, you will want to register it with the IRS. That way, if you have questions about your loved one’s taxes, you will be able to speak to the government about them. Otherwise, privacy laws would prohibit the IRS from giving out tax information. The form I used to do this is called a Power of Attorney and Declaration of Representative [PDF].
You may also want to register your DPOA with your state’s Franchise Tax Board. In California, for example, the form is an Individual or Fiduciary Power of Attorney Declaration [PDF].
You will also need to have access to your loved one’s financial accounts so that you can handle bill paying, tax filing, and other paperwork for them. Because a DPOA expires upon the death of the person, you will have had to have made arrangements early on so that you can still access your loved one’s bank accounts. The easiest way to do this is to become a joint owner of the bank account (with permission from your loved one) while they are still competent to consent.
In addition, you need to make sure your PwD has a will or a trust in place. Now is the time to begin the uncomfortable and difficult end-of-life discussions with your loved one. Do not delay!
Hiring an Attorney
The best approach is to find a certified elder law attorney (CELA) as soon as possible. They will be able to guide you through all of the legal decisions as they relate to your particular circumstances. No two cases of dementia are the same—and, again, state laws differ—so a generic power of attorney form might not cover all of your and your loved one’s specific needs.
For example, spouses should know that there are tricky laws regarding Medicaid, so you’ll want to review plans with a CELA early on, in case you end up needing that program.
I won’t lie—these are difficult topics to discuss, and the conversations you need to have may be unpleasant and/or antagonistic. Often, people with dementia don’t realize they have it, or forget that they have it (see anosognosia), so they may react poorly when you try to talk to them about these kinds of issues. They might think you’re only after their money, or something else in that vein. Keep in mind that, if you are having difficulty, you can always retreat for a bit and bring things back up in conversation again later, but try not to let the situation go unresolved too long.
Completing all of these tasks is necessary, and you’ll thank yourself later on. You’ll also thank yourself for avoiding the headaches and worry that come from not having a plan at all.
In my case, I got my ducks in a row with a DPOA a few months after my sister’s diagnosis, when she was in the very early stages of her disease and still of sound mind. And I think we were lucky; if I had waited even just six months longer to take care of that, I don’t think she would have been legally able to consent. A couple of months later, she and I met with her financial advisor together, which is further step I highly recommend if you are able to do it.
I wanted the bank professionals in Peggy’s life to witness our relationship in person, to see that it was a good one. By meeting these people when she was still capable, I could show them our interactions, and that Peggy herself thought I was reasonable. When you’re building a trust relationship, that’s really important! I let Peggy direct that first appointment, helped her tackle as many planning tasks as she was comfortable with, and just filled in any gaps. So they could see I wasn’t taking advantage, that I was trying to protect her. That went a long way.
I’m not sure I would have thought of introducing myself like this if I hadn’t already had a similar experience with my dad years earlier, when I used to accompany him to the bank and to his accountant. He was perfectly capable of handling those appointments on his own, but having me there with him provided an early opportunity for me to be included in his planning. Also, the professionals could get his permission directly for me to handle any further tasks for him, and that convenience and understanding carried over to the end of his life.
*Please note: none of the above should be construed as professional legal advice. Be sure to speak with a Certified Elder Law Attorney to make sure you’ve completed all your paperwork correctly. All of my comments come from my experience as a caregiver.
