When we read about the onset of dementia, we assume its symptoms will develop gradually over a period of months and even years. We think that, if it happened to us, we’d have time to adjust. But with the unpredictable nature of dementia, that’s not always true.

Recently we came across a column called The Moneyist, a regular feature on the MarketWatch website. In this edition of The Moneyist, financial writer Quentin Fottrell responds to a man whose dementia came on him suddenly and caught him and his wife off-guard. Fottrell gives the shocked couple some helpful advice – but is it enough? Let’s take a look, after which we’ll get Rajiv’s resp0nse to this devastating situation.

Couple’s Life Upended by Sudden Onset of Dementia

Fottrell opens his article with the letter in full, in which the man writes chillingly about his sudden brain damage and dementia. “Word to the younger folks,” the man begins, “I woke up last year and suddenly could not spell or write legibly. No warning. No symptoms.”

He goes on to add that his intention in writing the letter is to get advice about how to protect his wife and their family finances. “She will get half my pension and she has an even better pension than I do,” he explains. “We have two long-term care policies — one is paid off and the other is 5 percent inflation-adjusted with lots of positive riders, et cetera.”

He then poses the question: if he ends up living a long time, and uses up his long-term care policies (which, he adds, are currently valued at $600,000) and has to go on Medicaid, will they have to sell their house to pay for it? And would consulting an elder-law attorney help?

The man’s conclusion is both heartbreaking and sincere: “I don’t want my wife to lose everything,” he writes. “Thanks for reading and a note to your readers from someone who knows: Do your bucket list traveling as soon as you can because you may not have the time left you think you do.”

The Moneyist Responds: Get Plenty of Support, Reassess Goals

Fottrell begins his response with the general advice: “Keep all your options open, and don’t embark on this journey alone.”

He adds, “You will need financial, legal, medical, social and emotional support. That will involve enlisting the help of loved ones and, yes, relying on a network of professional support. You will need to reassess your financial goals, debts, savings, insurance, income and expenses. Take it one day, one step at a time. There are government programs that could provide help, and you may be able to withdraw money from your IRA even if you are not 59½ without incurring a penalty.”

Dementia Isn’t a Disease – It’s a Symptom

For context, Fottrell provides some deeper information about dementia itself. A common misconception is that dementia is a disease, when it is in fact a symptom of a larger issue.  He explains, “There are over 100 diseases that could cause symptoms consistent with dementia,” of which Alzheimer’s disease is the most common type, according to the Centers for Disease Control and Prevention.

The latest numbers from the CDC tell us that approximately 5.8 million people in the U.S. have Alzheimer’s disease and related dementias, which includes 5.6 million people aged 65 and older and 200,000 under 65.

Frontotemporal degeneration, or FTD, is another type of lesser-known dementia brought into the spotlight recently because of the public diagnoses of former talk-show host Wendy Williams and actor Bruce Willis. “That is a common cause of dementia, and characterized as a group of disorders that occur with the loss of nerve cells in the frontal and temporal lobes,” Fottrell writes. “Aphasia, the inability to process words and communicate properly, can be one symptom.”

Smooth the Dementia Path by Updating Essential Documents 

Fottrell then gets down to brass tacks, explaining that the best way to “smooth the path ahead” is to update several documents, including the will and financial power of attorney. And make sure they are airtight by consulting with an expert. “Don’t do a DIY version,” he warns, and recommends reading “The Power of Attorney’s Notebook.”

He also encourages the man to reassess his investment portfolio based on their new financial plan and risk tolerance.

Other documents needing attention could be an advanced healthcare directive, which informs your healthcare providers about what actions you would like them to take if and when you are unable to make those decisions on your own. He advises, “You may wish to list your wife as your healthcare proxy to carry out those decisions. You are a team, but serious medical issues can put pressure on a marriage, so she will need emotional support, too.”

Share Your Dementia Journey and Create a Team

Fottrell consistently emphasizes the need for all kinds of support multiple times throughout his response, especially in these updated documents. He encourages the man to list a successor to his wife on both the POA and the healthcare directive to lift some of the considerable burden from her shoulders in what will already be a complicated time for her.

“Share your story with trusted family and friends and create a team — a community of people who can provide support, the latter of which should include updating your beneficiaries,” Fottrell writes. “You could also write instructions for easy access to your devices, documents and even your daily habits.”

Long-Term Care Insurance Helps with Dementia-Related Costs

But it’s not all to-do lists. Fottrell highlights and praises one thing in the man’s letter that he calls the “power of example for others reading”: the man’s early investment in long-term care insurance, especially policies worth $600,000.

“[H]aving a LTC policy, more than anything, will help alleviate the financial burden that lies ahead,” he writes. This is because, as he explains, nursing-home care costs can vary dramatically depending on the type of care, state, and institution (up to $125,000 a year). 

As to the man’s question about working with an elder-law attorney, Fottrell is in favor, and says that the cost is well worth it. He estimates that an elder-law attorney can cost anywhere in the neighborhood of $100 to $600 an hour, depending on the services required. But experts in your corner are worth the money.

“An attorney and financial adviser will help you take an accounting of your assets, income, expenses and projected long-term care costs, and help you plan accordingly,” he explains. “Financial planners often have a professional network that includes attorneys and accountants, who can collaborate on your case, and share valuable information.”

A Safe Harbor Trust Can Help Protect Your Assets

Attorney Elizabeth Forspan also agrees with enlisting the help of experts, especially in regards to Medicaid, saying, “Perhaps you can create a trust and divest yourselves of some of your assets now in order to make it through the five-year Medicaid look-back and during that time use your long-term care policy. You will not be able to determine this on your own, most likely.”

Fottrell adds, “An attorney and financial planner can help you weigh up the pros and cons. It may be that you decide to keep your home. Selling any valuable asset, particularly a home, should be a last resort.”

He goes on to explain that there are exceptions to the five-year look-back rule for Medicaid eligibility, writing, “They include paying off debts, buying medical devices or home improvements to improve accessibility, according to the American Council on Aging, a Medicaid resource funded by planning firm Eldercare Resource Planning.”

He adds, “But your income and other assets may also disqualify you from Medicaid eligibility. You can read more on Medicaid rules here.” 

In his conclusion, Fottrell goes on to elaborate about the rules in various states that exempt homes from assets calculated by Medicaid. We invite curious readers to explore the original article for more about that, if interested.

Rajiv’s Take: Don’t Assume You Have Unlimited Time

We asked Rajiv Nagaich to weigh in on this couple’s story, and he has some strong opinions. Most important, he asks, why wait until there’s a crisis to take action?

“As I read this article, I really feel for the couple writing to MarketWatch,” says Rajiv. “The idea of waking up one day with symptoms of dementia is pretty terrifying, I have to admit. But then,” Rajiv adds, I have to ask myself: why did this couple wait until there was a dire emergency before doing some of the common-sense things that this article recommends? It just makes no sense to me!”

Rajiv has seen over and over again how procrastination leads to retirement disaster. “Look,” he states, “I hate to say it, but if this couple had not faced a healthcare crisis, would they have put their estate plans in order? Would they have established their support group and engaged their family in a serious conversation about what might be expected of them down the road? Now,” Rajiv observes, “they’re under the gun and trying to adjust their plans while one of them is facing dementia that’s only getting worse.”

Even With a Dementia Diagnosis, You Still Have Choices

Rajiv is adamant that a dementia diagnosis doesn’t have to leave you feeling helpless. “There are still plenty of things you can do to stabilize and even reverse the progress of dementia, besides just waiting for it to get worse,” he states emphatically. “Plenty of recent studies [including this one from the Cleveland Clinic] have shown that basic things like diet, exercise, and proper sleep can improve dementia symptoms.  A famous study of aging nuns showed how a life of purpose can keep dementia symptoms at bay even when all the physical signs are there. Bottom line is, there’s definitely hope that you can actually reverse dementia.”

What about the housing issue, we asked Rajiv? Does a dementia diagnosis mean you’ll have to move? “No, not necessarily,” Rajiv responds. “You may be afraid you’ll have to move to a nursing home or that you’ll become an unbearable burden to your loved ones. Neither needs to happen!” 

Instead, he urges, you and those closest to you should focus on building a plan that will guarantee that the care you require will come to you, even as your needs increase. “Your loved ones don’t have to become your unpaid caregivers,” says Rajiv, “and you don’t have to run out of money, if you plan properly.” 

Rajiv’s advice is clear: don’t wait for a crisis. Involve your support group, especially your family, early on. Give them a clear road map telling them what you need them to do on your behalf. For more about Rajiv’s take on establishing family support in retirement – a critical need we too often overlook — check out this article on our Blog.

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(originally reported at www.marketwatch.com)