I’ve been diagnosed with dementia. I suddenly could not spell or write legibly: ‘I don’t want my wife to lose everything.’

Feb 25, 2024
i’ve-been-diagnosed-with-dementia-i-suddenly-could-not-spell-or-write-legibly:-‘i-don’t-want-my-wife-to-lose-everything.’

“Do your bucket list traveling as soon as you can because you may not have the time left you think you do.” (Photo posed by models.)

“Do your bucket list traveling as soon as you can because you may not have the time left you think you do.” (Photo posed by models.) – Getty Images

Dear Quentin,

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I have been diagnosed with brain damage and dementia. Word to the younger folks: I woke up last year and suddenly could not spell or write legibly. No warning. No symptoms. I am getting worse, so I want to protect my wife of 24 years, and our finances. She will get half my pension and she has an even better pension than I do.

We have two long-term care policies — one is paid off and the other is 5% inflation-adjusted with lots of positive riders etc. If I end up living a long time and use up my long-term care policies — currently valued at $600,000 — and have to go on Medicaid, will we have to sell our house to pay Medicaid?

I don’t want my wife to lose everything. Will an elder-law attorney really help? I have heard mixed reviews, and that they come at a huge cost. 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.

Love & Peace

“You will need financial, legal, medical, social and emotional support. That will involve enlisting the help of loved ones.”

“You will need financial, legal, medical, social and emotional support. That will involve enlisting the help of loved ones.” – MarketWatch illustration

Dear Love & Peace,

Keep all your options open, and don’t embark on this journey alone.

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 is a symptom rather than a disease itself. In fact, there are over 100 diseases that could cause symptoms consistent with dementia. Alzheimer’s disease is the most common type of dementia, according to the Centers for Disease Control and Prevention. 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, the CDC says .

There are other forms, including frontotemporal degeneration (FTD), which have received greater public awareness since the FTD diagnoses of former talk-show host Wendy Williams and actor Bruce Willis were made public. 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. Aphasia, the inability to process words and communicate properly, can be one symptom.

Power of attorney and healthcare directive 

There are several things you can do to smooth the path ahead. Update your will, and create a financial power of attorney. Don’t do a DIY version. As my colleague, MarketWatch reporter Beth Pinkser pointed out , it is complicated. You can read “ The Power of Attorney’s Notebook.” You may also wish to reassess your investment portfolio, based on your new financial plan and risk tolerance. (I assume you are not yet 65, and as such do not qualify for Medicare.)

An advanced healthcare directive informs your doctors what action you want them to take if or when you are unable to make those decisions yourself. 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, as this couple discovered , so she will need emotional support, too. Also, ensure you have a successor to your wife on both your POA and healthcare directive.

Your wife will have a lot of responsibilities: paying utility bills, paying your mortgage, keeping up to date with your medical care and finances, and managing her own life at the same time. 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. You could also write instructions for easy access to your devices, documents and even your daily habits.

Long-term care insurance helps with expenses

You have done one key thing, something that should be a power of example for others reading your letter. You invested early in long-term care (LTC) insurance and have policies worth $600,000. (You do not specify if you took out  shared policies .) But having a LTC policy, more than anything, will help alleviate the financial burden that lies ahead. Nursing-home care costs can vary dramatically depending on the type of care, state and institution ( up to $125,000 a year ).

An elder-law attorney could cost you anywhere from $100 to $600 an hour, depending on the kind of services you need. 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. Financial planners often have a professional network that includes attorneys and accountants, who can collaborate on your case, and share valuable information.

“It is difficult for many people to decide whether and when to put your long-term care policies in payout status, and that is very understandable as the policy has a limited term or cash cap and may run out if you put it into effect too early,” says Elizabeth Forspan, an attorney with Forspan Klear LLP. “However, if you mix this with a Medicaid plan, then it can be extremely effective. You should look at the specific Medicaid rules in your state and jurisdiction.”

Creating a trust to protect your assets

“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,” she adds. “You will not be able to determine this on your own, most likely.” 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.

There are exceptions to the five-year look-back rule for Medical eligibility: 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. But your income and other assets may also disqualify you from Medicaid eligibility. You can read more on Medicaid rules here .

Some states, including Florida and New York, have rules that exempt homes from assets calculated by Medicaid , under certain circumstances. In New York, you need to live in the home while receiving care or plan to return to the home after your care. California eliminated their asset limit this year, making a person’s home automatically safe from Medicaid while they are living; however, that does not mean it’s safe from Medicaid’s Estate Recovery Program.

I wish you and your wife the best of everything on this journey.

You can email The Moneyist with any financial and ethical questions at qfottrell@marketwatch.com, and follow Quentin Fottrell on X, the platform formerly known as  Twitter.

The Moneyist regrets he cannot reply to questions individually.

Previous columns by Quentin Fottrell:

‘Things have not been easy’: My sister is a hoarder and procrastinator. She is delaying probate of our parents’ estate. What can I do?

‘I gave up a job that I loved passionately’: My husband secretly set up a trust that includes our home and his investments. What should I do?

I have $1.5 million in stocks and bonds. I asked my broker to convert my bonds to cash. He didn’t and my portfolio fell by $100,000. Can I sue?

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