Estate planning is not solely about preparing a will, and with Parkinson’s you need to think about estate planning as planning for life and for the future stages of your disease as it progresses, as discussed in an article from the Parkinson’s Foundation, “Planning Ahead: Estate Planning”. The life planning portion of estate planning can be very different for a person with PD than a person without.
While you may feel you are not old enough to have an attorney prepare you a revocable trust, having PD means you will want to draft this at an earlier stage than most. A majority of your assets must be retitled to and aligned in a trust that should name you and a family member or trusted friend or advisor as trustees. This is a powerful tool to protect you as Parkinson’s progresses.
There are a few documents you should already have, financial and health related.
Financial: You should have a durable power of attorney and a trust set up. The durable power of attorney names a person who will handle your financial affairs if you become incapacitated, as well as tax and legal matters. This person should take into account the characteristics of Parkinson’s as they make decisions.
Health: You will want a durable power of attorney for health care (also referred to as a Health Care Proxy), this person might be separate from who you named to take care of your financial matters. They will make decisions about your health if you are seriously ill or in a medical emergency. This person should be familiar with PD and your experience with it. Another document you will want is an advanced directive that provides written directions about your preferences for future medical treatments. It can also name health care agent(s) to make decisions. Since PD is such a progressive disease, you will want to give thought to who you will want to designate as a guardian for the future. Health documents need to be shared with your medical team and copies should be placed with your medical chart.
Note, these financial and health documents are aimed at planning for incapacitation. Incapacitation can sometimes be viewed as black white, either you are or you are not. Yet, disability comes in many shades that is why fine-tuned planning is necessary to combat this view as your PD progresses. It can’t be stressed enough that understanding the potential progression of PD and the consequences is essential to ensure your planning and legal documents conform to those challenges.
One of the main takeaways to remember, know the potential progressions of PD, and be open and honest about it and what it means with your estate planning attorney. Once you hire an attorney, being upfront will help to make sure that your working relationship and the plan you produce is optimal for you. You will want to review your overall plan annually in order to create a history of your wishes so that you are able to fine tune as your PD progresses and avoid the struggle to sign and make significant decisions after the disease has progressed substantially. Your estate planning attorney may need to take additional precautions to document your competency to execute legal documents the further along your PD gets, this will likely include a letter from your attending neurologist about PD’s cognitive impact on you and the medications you are taking.
In advance of your meetings with your attorney, request an agenda to be prepared and bring someone with you to assist in taking notes. After the meeting, prepare an action list of steps to break the planning into phases. Make sure you schedule meetings for the times of day that you will be at your best, if you take medication in the morning, then maybe meet in the afternoon when it has had time to take effect.
One last piece to note, micrographia (your hand writing getting smaller and smaller), is a common PD symptom. A tip with this is to have your lawyer prepare several formal witnesses and notarized affidavits which you sign at different times during the day in order to document the changes in your signature. This can be helpful later when trying to convince someone that your signature is real even if it differs from something on file.
Being diagnosed and living with PD means there are a lot of changes in your life. Preparing for the effects of your disease is critical. Remember, estate planning is about life planning too, not just death.
Reference: Parkinson’s Foundation, “Planning Ahead: Estate Planning”, “Estate Planning and Parkinson’s 101 + New Tax Laws”