Updating an estate plan after a diagnosis — what changes
This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.
A parent's diagnosis changes things. Sometimes it changes everything. You get that call or that appointment confirmation, and suddenly the estate plan your parent signed five or ten years ago feels like it belongs to a different time. You might not even know where it is. You might know it exists but never looked at it. Either way, there's a weight to it now that wasn't there before.
The diagnosis could be Parkinson's, dementia, cancer, heart disease, or something else entirely. What matters is that your parent's timeline and needs have shifted. They're not thinking about retirement anymore. They're thinking about treatments, about managing symptoms, about who's going to help them when they can't manage anymore. The estate plan your parent created was built on assumptions that are no longer true.
This is not just about money, though money will matter. This is about your parent's wishes, about what happens to their home, about who makes decisions when they can't. A diagnosis accelerates these conversations. It also clarifies them. You no longer have to discuss abstract scenarios. You're discussing what might happen to your parent specifically, based on medical information that exists right now.
The hard part is knowing where to start. Your parent might feel overwhelmed. You might feel overwhelmed. There's a diagnosis, there might be treatments starting, there are appointments and decisions and people to call. The last thing anyone wants to think about is updating legal documents. But updating the estate plan now, while your parent can make clear decisions about their preferences, is one of the most important things you can do together.
Understanding Why the Changes Matter
An estate plan is a collection of documents that tell the world what your parent wants. It includes the will, which says who gets what. It includes powers of attorney, which say who makes decisions if your parent can't. It might include a living trust, which lets your parent's assets avoid probate. It might include healthcare directives, which specify what kind of medical treatment your parent does or doesn't want. It might include guardianship documents, depending on your parent's situation and state law.
When a diagnosis comes, some of these documents become actively relevant instead of theoretically relevant. A healthcare directive that your parent signed when they were healthy now describes what they want to happen if the disease progresses. A power of attorney that seemed like a formality now determines who will manage their finances and medical decisions when they cannot. The will now describes a different inheritance scenario, because the diagnosis might mean medical bills, or home care, or long-term care that wasn't anticipated.
The changes aren't always dramatic. Your parent might not need to change the broad strokes. But they might need to add clarifications. They might need to change who has authority to make what decisions. They might need to address specific concerns that the diagnosis has raised. They might need to update healthcare wishes. They might need to think about Medicaid planning if the diagnosis means expensive care is likely.
Your parent's assets might look different now too. If there's money set aside for care, that becomes more concrete and urgent. If there's a home with a mortgage, the question of what happens to that home becomes sharper. If there are long-term care costs ahead, the plan needs to account for that differently than a plan created when those costs were only theoretical.
The timeline is different too. Before the diagnosis, your parent might have planned to work another five years. They might have assumed they'd be independent for another twenty years. Now those assumptions are uncertain. The estate plan needs to reflect a different reality. It might need to address who pays for care. It might need to address how assets will be distributed if your parent needs long-term care. It might need to address whether Medicaid planning makes sense.
The emotional weight is different. Your parent created their original will or trust based on certain feelings about who should inherit what, about what their legacy should look like. A diagnosis doesn't always change those feelings, but it often does. Your parent might feel more urgency to help a child who's struggling. They might feel differently about their own medical wishes. They might want to leave money for their grandchildren's education, or to a cause they care about, or to a facility that will care for them. A diagnosis makes these feelings more present.
Your Parent's Specific Situation
Start by asking your parent what they know about their current estate plan. Do they remember having a will made? Do they remember signing a power of attorney? Do they have a copy somewhere? Can they find it?
This isn't always easy. Your parent might not want to talk about legal documents. They might not want to face the reality that the documents need to change. They might feel ashamed of their financial situation, or worried about what the documents will reveal about their wishes. Give them time. Let them know you're asking because you want to help, not because you're trying to control anything.
Once you know what documents exist, your parent needs to consider a few specific questions. First, who did they name as power of attorney for financial decisions? That person will make money decisions if your parent can't. Is that person still the right person? Have circumstances changed? Is that person still willing and able?
Second, who did they name as healthcare power of attorney, or did they specify healthcare wishes in a living will? These documents determine what happens if your parent is unconscious or unable to make medical decisions. Now that your parent has a diagnosis, those decisions become more concrete. Your parent might want to clarify what kind of treatment they do or don't want. They might want to specify what quality of life means to them. They might want to appoint a different person to make healthcare decisions than they appointed years ago.
Third, what assets does your parent have? This isn't a snooping question. It's a practical question. If your parent has significant assets, they might benefit from a living trust, which can avoid probate. If your parent's assets are modest, a simple will might be enough. If your parent's assets are complicated, or if your parent has significant income or owns a home, there might be tax planning to do. The diagnosis changes this calculation because it affects how long your parent might live and what costs they might face.
Fourth, what are your parent's wishes about long-term care and Medicaid? This is a technical question, but it matters. If a diagnosis means your parent might need expensive long-term care, Medicaid might eventually pay for it. But Medicaid has rules about assets. If your parent's estate plan doesn't account for this, your parent might end up spending down assets unnecessarily, or might face complications when Medicaid eligibility needs to happen. Some states have special planning for this. Some don't. This is something to discuss with an elder law attorney.
Fifth, who should inherit what? Has the diagnosis changed your parent's thinking about this? Some parents want to leave everything equally to their children. Some want to recognize that one child spent more time caregiving. Some want to leave money to grandchildren or to a cause they care about. Some want to provide for a disabled child in a way that doesn't disrupt government benefits. These wishes might be new, or they might be wishes your parent had all along but never clarified. Now is the time to clarify them.
Sixth, what happens to the family home? This matters a lot. If your parent needs long-term care, the home becomes part of the financial picture. If the home needs to be sold to pay for care, that's a different outcome than if the home is protected and will pass to the children. Some states allow this. Some don't. This is something to discuss with an elder law attorney.
Taking Next Steps
The next step is getting the documents reviewed by an attorney. This doesn't have to be complicated or expensive. Your parent doesn't need to hire an estate planning specialist if that's not affordable. But the documents do need to be reviewed by someone who understands the law in your parent's state and understands the diagnosis and its implications.
Start by looking for an elder law attorney. These attorneys specialize in issues that affect older adults. They understand both estate planning and Medicaid. They understand healthcare directives and powers of attorney. They understand what changes when a diagnosis comes. If your parent's state bar association has a referral service, start there. If your parent knows an attorney they trust, that attorney can probably refer you to someone who specializes in elder law.
The timeline matters here. Your parent needs to have capacity to execute new documents. Capacity means your parent understands the nature and extent of their assets, understands their family situation, understands what the documents will do, and is making decisions freely. A diagnosis doesn't automatically mean lost capacity. But the progression of some conditions can affect capacity. If your parent's condition is likely to progress in a way that could affect capacity, the documents should be signed sooner rather than later. The attorney can assess your parent's capacity and advise on timing.
The cost varies. An attorney might charge a flat fee to update a will and powers of attorney. They might charge an hourly rate. If your parent's situation is complicated, especially if there's Medicaid planning involved, it might cost more. There might be community legal services available if cost is a barrier. Some attorneys offer free or reduced-cost consultations. It's worth asking about options.
Your parent should bring certain documents to the attorney appointment. The original will, if they can find it. The original power of attorney documents, if they exist. A list of assets, approximate values, and what's owned in which names. A list of debts and obligations. A list of family members and any special situations (a disabled child, a grandchild your parent wants to help with education, a child who's struggling). Any healthcare directives or living will documents that exist. Insurance policies. Information about pensions or retirement accounts.
The attorney will help your parent think through what changes need to happen. If your parent's condition is likely to progress, the documents might need to address that progression. If your parent is likely to need long-term care, the documents might need to address that. If your parent has substantial assets, there might be tax-efficient ways to structure things. If your parent's assets are modest, the documents might be simpler.
Your parent should be clear about their wishes when talking to the attorney. This is where the conversations you've had together matter. If you've talked about what your parent wants, you can help your parent communicate clearly to the attorney. If you haven't had those conversations, this is the moment to have them.
Be prepared for the attorney to ask questions that might feel intrusive. The attorney needs to understand your parent's situation completely in order to draft documents that actually reflect your parent's wishes and protect your parent's interests. Questions about family relationships, about finances, about what kind of care your parent wants, about what matters most to your parent—all of these are normal and necessary.
The new documents will probably include an updated will, updated powers of attorney, and updated healthcare directives. They might include a living trust if that makes sense for your parent's situation. They might include other documents depending on your parent's circumstances.
Once the new documents are signed, they need to be stored somewhere safe and accessible. Your parent should tell the relevant people where they are and how to access them. The power of attorney documents should be given to the person who's named as power of attorney, or to your parent's advisor or attorney. The healthcare directives should be given to your parent's healthcare provider and to the person who's named as healthcare power of attorney. The will should be stored somewhere safe, and the executor named in the will should know where it is.
The Real Picture
This isn't fun work. It's work that forces you to think about things you don't want to think about. Your parent is sick or will become sick. Your parent might need care. Your parent will eventually die. These are facts. The documents don't make them happen. They just make sure that when these things happen, your parent's wishes are known and can be followed.
The other thing these documents do is protect your parent's interests. They make sure the people your parent trusts are the ones making decisions, not some court-appointed stranger. They make sure your parent's wishes about medical treatment are honored. They make sure the assets your parent spent a lifetime building go where your parent wants them to go, or go toward your parent's care if that's what's needed.
There's peace in that, once the work is done. Your parent has made clear decisions. Everyone knows what your parent wants. There's no ambiguity, no fighting, no guessing. It's hard work, but it's done, and it matters.
How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation. If you are concerned about a loved one's cognitive health or safety, consult with their healthcare provider or contact your local Area Agency on Aging for guidance and support.