Living with Parkinson’s disease (PD) brings unique challenges – not only in managing health, but also in planning for the future. Effective estate planning is not just about preserving wealth and reducing taxes; it’s about peace of mind, protecting your loved ones, and ensuring your wishes are carried out. For those impacted by Parkinson’s disease, careful planning can make the difference between uncertainty and security.
Why Estate Planning Matters with Parkinson’s
Estate planning is about more than just distributing assets after death… It’s about life planning – coordinating your investments, insurance, emergency resources, and caregiving needs. For individuals living with PD, the plan must adapt to the disease’s variability and progressive nature.
Standard documents you might find online often fall short. Customizing your plan with an experienced Elder Law Attorney ensures you remain in control for as long as possible while preparing for transitions that may come.
Step 1: Get Organized
Start by gathering critical information in one place. Include:
- Medical Details: doctors, specialists, medications, dosages;
- Emergency Contacts: family, friends, professional advisors;
- Financial Information: account numbers, passwords, legal documents, budgets;
- Investment Details: account ownership, trusts, joint accounts, safe deposit access, risk profile, goals.
Automations like online bill paying or automatic deposits can reduce stress and help you better track expenses, making it easier to maintain control as PD progresses.
Step 2: Appoint a Financial Agent
A Durable Financial Power of Attorney allows someone you trust to handle legal and financial matters on your behalf. A Durable PoA means that it is in effect immediately and stays in effect unless you revoke it, even if you become incapacitated. You maintain control, and your Agent is obligated to act in your best interest.
With a Parkinson’s diagnosis, it may make sense to include the following provisions:
- Name co-agents for oversight and workload shifting;
- Include powers allowing expenditures for home modifications;
- Ensure back-up Agents are familiar with your accounts and goals.
Step 3: Choose a Health Care Proxy
A Health Care Proxy is another name for an Agent under a Power of Attorney for Healthcare. This is someone you appoint to make medical decisions if you are unable to do so. When selecting an Agent, consider:
- Does your Agent understand Parkinson’s disease?
- Is your Agent geographically close enough to respond in emergencies?
- Do you wishes align with their personal or religious beliefs?
- Will they be able to follow your wishes, even if other family members disagree?
Step 4: Create a Living Will
A Living Will, also called a Directive to Physicians, puts your wishes for life-extending care into writing, guiding your Agent and medical team. The Texas Statutory Form only allows the following designations:
If, in the judgment of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care OR an suffering with an irreversible condition so that I cannot care for myself or make decisions for myself, and am expected to die without life-sustaining treatment:
__ I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible; OR
__I request that I be kept alive in this terminal condition using available life-sustaining treatment. (This Selection Does Not Apply To Hospice Care.)
For those living with Parkinson’s disease you may also want to put into writing your wishes for:
- Lifestyle Preferences – in-home care vs. assisted living vs. nursing home?
- Medical Treatments – experimental therapies or non-traditional options?
- End-of-Life Care – what does “heroic measures” mean to you?
- Research Contributions – would you like to donate organ or brain tissue?
Step 5: Protect Your Children
For parents with young-onset PD, or those with a family member with special needs, planning is essential:
- Appoint a Guardian under your will;
- Provide powers to your Financial Agent to fund child care and educational expenses;
- Create Emergency Medical Forms for dependents;
- Consider 529 education plans and other savings tools.
Step 6: Sign Your Last Will
Your Will specifies how your assets will be distributed upon your death, and who will act as Executor. It will also name Guardians for any minors. When living with PD, you may want to consider:
- Including Letters of Instruction;
- Creating Trusts for children or dependents (including Special Needs Trust if necessary);
- Suggest that others (parents, spouse) create trusts for your benefit instead of leaving assets directly to you.
Step 7: Establish a Revocable Living Trust
Unlike a will, a Revocable Living Trust addresses both life and death. It allows you to manage assets more easily while living with PD, and to transition that authority smoothly should you become incapacitated or pass away. Parkinson’s informed trusts may include:
- Provisions preventing premature removal of a Trustee during short-term health events’
- Guidance on lifestyle preferences;
- Clauses supporting children’s care & education.
Step 8: Review Insurance Coverage
Insurance planning is critical when living with Parkinson’s disease. Be sure to evaluate your coverage for:
- Long-term care
- Disability income replacement
- Life Insurance options
- Homeowner’s insurance riders for in-home caregivers, or home modifications
- Rental insurance
- Liability insurance
Step 9: Update Beneficiary Designations
Beneficiary designations override your will. Make sure they align with your overall plan, and consider whether or not loved ones should name a trust for your benefit instead of naming you directly. Common accounts with beneficiary designations include:
- Life Insurance
- Pensions
- IRAs
Step 10: Give Back
By including charitable gifts in your Estate Plan, either through your Will, Life Insurance beneficiary designation, or direct donation, you communicate your values to those close to you. You may feel gratitude towards a Parkinson’s-related charity or some other cause. Even modest contributions make a positive impact.
Step 11: Communicate Clearly
Open communication with your family, friends, advisors, and care team is essential. Talk about your wishes, expectations, fears, and plans. Follow-up with written instructions to avoid confusion later. A great place to start is The Conversation Project – which offers free, downloadable guides.
Step 12: Review & Revise
Estate Planning is not a one-time event. Laws, family situations, finances, treatments, and health all change frequently. Regularly update your plan to reflect your current situation and wishes.
Conclusion: Start Today
Estate Planning for individuals impacted by a Parkinson’s Disease diagnosis is about maintaining control. By getting organized now, tailoring your documents, and communicating opening, you provide peace of mind for yourself and your loved one.
Contact our office today to get started.
Information based on a presentation from the Michael J. Fox Foundation: https://www.michaeljfox.org/sites/default/files/media/document/MJFF-Estate-Planning-with-PD-Presentation.pdf
