Planning Ahead: Trusts and Long-Term Illness

Facing a long-term illness—either personally or with someone you love—can feel overwhelming. It brings emotional, physical, and financial challenges. That’s why estate planning becomes especially important. One of the most helpful tools in that planning? Trusts. When it comes to trusts and long-term illness, the right setup can provide clarity, preserve access to benefits, and ease the caregiving burden. 

Estate Planning Is Crucial When Facing Long-Term Illness

Long-term illness can affect every part of a person’s life. Whether it’s a chronic condition like Parkinson’s or a progressive disease like Alzheimer’s, the future can be hard to predict. Medical care may become more intensive. Decision-making may become more difficult. The financial picture may shift entirely.

Estate planning doesn’t solve everything, but it does create a roadmap. It ensures that your values, preferences, and financial resources are protected and clearly outlined. And for many families, trusts are a cornerstone of that roadmap.

Trusts and Long-Term Illness Situations

Trusts allow you to set aside assets to be managed by a trustee—someone you trust to follow your instructions. These instructions might include how to use the assets, when, and for whom. Here’s how trusts can make a meaningful difference when navigating long-term illness.

Preserving Eligibility for Public Benefits

Many people facing long-term illness rely on needs-based programs like Medicaid or Supplemental Security Income (SSI). These programs have strict asset limits. Without careful planning, even a small inheritance or financial gift can disqualify someone from receiving support.

Special needs trusts or supplemental needs trusts are designed to solve this. These trusts allow funds to be used for the person’s benefit—covering things like therapies, transportation, or caregiving—without jeopardizing access to public assistance.

Planning for Progressive Cognitive Decline

When a condition involves memory loss or cognitive impairment, decision-making can become complicated. A revocable living trust can help.

By placing assets into a living trust and naming a trustee (often a spouse or adult child), you ensure someone trusted can manage those assets if the person becomes unable to do so. It avoids the need for court intervention and provides peace of mind for everyone involved.

Real-World Example: Living with ALS

Take the example of a man diagnosed with ALS in his early 50s. He knows that over time, his physical abilities will change dramatically. Working with his family, he creates a revocable trust. As his condition progresses, his chosen trustee steps in to handle financial responsibilities, including paying medical bills, coordinating insurance, and ensuring his home remains accessible.

Because the plan is in place early, there’s no panic or court battles. Just a clear, structured system to support his needs.

Trusts Offer More Than Financial Control

A trust isn’t just about money. It’s also a way to protect values and reduce stress for caregivers. You can include specific guidance, such as:

• Who should manage caregiving duties
• Whether to stay at home or consider assisted living
• How to prioritize treatments or therapies
• Which charities to continue supporting

In short, it can reflect the full picture of what matters most.

Trusts and Long-Term Illness: Start Planning

The best time to create a trust is before a crisis. Even if a diagnosis has already happened, starting now can still provide meaningful benefits. 

Here are some things to do:

• Make a list of assets: Include bank accounts, property, insurance policies, and digital accounts.
• Consider care needs: Think about now but also 5 or 10 years ahead.
• Choose a trustee wisely: Select someone who is organized, trustworthy, and able to make decisions under pressure.
• Write down your wishes: Be specific—especially about medical preferences and caregiving support.

Trusts and long-term illness go together when it comes to protecting dignity, autonomy, and stability. By planning ahead, you can create structure in a time of uncertainty—and make sure care and comfort are at the center of that plan.