In 1993, Tom Manak’s wife, Ro, was diagnosed with early-onset Parkinson’s disease at age 36. For many years, he says they chose to avoid the reality of their future since her symptoms were minimal, and she was able to live her normal life. Ro continued working, participating in church choir and many other activities. Tom’s career in health care administration allowed their lifestyle to continue mostly as usual while her condition slowly progressed.
Nearly two decades later, Tom was nearing retirement. Ro was experiencing dementia related to her Parkinson’s disease progression. This prompted the couple to focus on ensuring their finances were in order so Ro would have the care she needed if something happened to Tom. “We were thinking about what her wishes actually were, and how to ensure she had the quality of life she wanted and needed.”
Preparing for retirement can be challenging on its own. It can be even harder for people living with—or caring for someone living with—a progressive, debilitating neurological condition. It becomes even more challenging when people, like Tom and Ro, do not have family support to rely on. “We had good health insurance and were able to hire in-home care when we needed it, but we had no children or close family, and I was very concerned with ensuring she would be cared for medically as we wished, and that someone would responsibly manage our finances if I wasn’t around to do it,” says Tom.
Colleen Ceh Becvar is a gerontologist—a person who studies aging—and co-founder of Illinois-based care management firm Trinity Advocacy Group. She says thinking about advanced retirement planning as Tom did is essential to ensuring the long-term well-being of patients. “Because Parkinson’s disease is progressive, the earlier a plan can be created and implemented, the better, so the patient can give as much voice to current and future decisions as possible.”
End-of-life planning after a neurological diagnosis
Receiving a life-altering diagnosis then beginning long-term planning is not easy. Ceh Becvar says Tom and Ro’s approach to avoid the situation is typical. “Accepting the diagnosis itself can understandably take time, and until that happens, it can be very challenging to focus on finances or the future.” When all your energy goes toward day-to-day care, it can be harder to plan for longer-term needs.
Even when a patient and caregiver are “ready,” determining how to move forward can be difficult. Claudia Chou, MD, an assistant professor of neurology and palliative care specialist at the Mayo Clinic, says having a neurological condition makes planning difficult even when you have the best intentions. “Patients often ask for a roadmap, but in neurology we don’t have standardized language like ‘you have stage 3 cancer,’ so we do our best to help them by talking about potential milestones such as needing more help to support the primary caregiver.” This may include hiring non-family caregivers or potentially transitioning to a more supportive living environment such as a skilled nursing facility.
Just as there isn’t a standard way to plan for a future with a neurological condition, Ceh Becvar says there is not typically one financial source that fully covers all costs that come with a long-term health care plan. “Costs are most often absorbed through a combination of insurance policies, savings, income, and government benefits. While most people do not have long-term care insurance, those who do should review the policy and its terms,” as soon after diagnosis as possible.
Important first steps in the planning process
Despite uncertainty about how a disease like Parkinson’s might progress and knowing how to plan financially, Ceh Becvar says there are many things people can do to create a plan that supports independence, dignity, and peace of mind.
First, she says, people with a new diagnosis should seek the counsel of a certified elder law attorney (CELA). “A CELA’s primary focus is ‘asset protection planning,’ and the earlier you meet them, the more assets can be protected for the financial well-being of both spouses.”
In addition, Ceh Becvar says there are three documents every patient and caregiver should have in place: powers of attorney for health care (POAHC), powers of attorney for property, and a last will and testament. Together, a client and attorney can decide whether a trust may be needed. She says, “Attorney-drafted documents carry more weight in the health care realm and most certainly in the financial realm. In addition, attorney-drafted documents have far more protections in them than statutory documents.”
Many banks or financial institutions have trust departments that can act as powers of attorney for property, but identifying someone to have POAHC can be difficult if there are no children or siblings available to take on that responsibility. This was Tom’s situation with Ro and his concern if he died first. His health care background helped him understand his options. He looked for and found organizations, care management companies, that could act as POAHC. He and Ro interviewed three and selected one as the POAHC. That organization continues to have that role even after Ro died.
While the documents serve a practical purpose for any adult, making the decision to draft them following a tough diagnosis can be emotional. At the same time, Tom says, this gave him a great sense of peace before Ro passed away at home in June 2021. “I spent so much time thinking about it before we had them [written], but once the documents were in place I didn’t worry anymore. They’re a safety feature like an airbag in a car that will work only if you need it.”
How to understand the end-of-life planning process
In addition to prioritizing legal documents, Ceh Becvar says that, ideally, advance planning for health care needs should be broken into three timeframes: immediate, short-term, and long-term.
- Immediate needs are those that must be addressed within the first 72 hours. This would likely involve a time of crisis such as an issue that requires a hospital stay.
- Short-term needs occur in the first three months and are the basics that are important for stability, like food, clothing, shelter, and medication.
- Long-term needs are those that will occur from three months through five years, and preparing for them can help people turn some of the uncertainty that comes with aging with a neurological condition into choice. “These are the big decisions that are thoughtfully made and, when made proactively, can bring tremendous relief when care needs escalate.” Examples include visiting care communities, interviewing caregiver agencies, finding a neurologist who specializes in your neurological condition, and finding and attending diagnosis-specific support groups.
Kerry Andrews, LICSW, (licensed independent clinical social worker) says such planning can bring peace during very challenging times—perhaps especially for the caregiver. “Until you’re in the midst of one, you can’t really appreciate how difficult it is to make decisions in a crisis. Ultimately, the caregiver is the one grappling with many of the hard things like ensuring a home is accessible or making tough medical decisions.” Simply having an advance care plan in place, she says, can make life a little easier even when things don’t always go exactly as planned.
Don’t go through it alone
As critical and useful as advanced retirement and health care planning are for long-term well-being, support networks and resources are just as important. For someone like Tom, who was caregiving and planning without children or family support, Ceh Becvar says the journey can be quite overwhelming. She recommends support groups, which become increasingly important as the disease progresses. She says, “Support groups can serve two purposes: Attendees both receive support and offer novel solutions to their fellow attendees, which can be very empowering.”
Navigating long-term health care and financial planning with a progressive neurological condition is a significant challenge. Making a plan and finding reliable support can make it easier for caregivers and ensure that patients maintain as much independence, choice, and quality of life as possible.
Additional resources
- Aging Life Care Association
A holistic, client-centered approach to caring for older adults or others facing ongoing health challenges. - Parkinson’s Foundation Library
Resources for understanding the aspects of Parkinson’s disease that are impacting your life. In the search box, type “financial planning.” - US Department of Veterans Affairs
Being a veteran may give you access to affordable care services and permanent income. - Agency on Aging
May help identify free or subsidized services in your city or state. - BrainWise
Articles and resources for people who are growing older.
