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No Staying Ahead of Dementia

One family finds legal and emotional help critical for an FTD diagnosis


Part 4 of the SPECIAL SERIES: Under 60 and Living With Dementia Special Report

Editor’s note: This is the fourth article in a Next Avenue series by Dan Browning about his family’s experience coping with his wife’s frontotemporal dementia (FTD). Preview the entire series here.

After doctors at the Mayo Clinic confirmed that my wife, Liz, had a terminal brain-wasting disease called frontotemporal dementia or FTD, I knew one thing for certain: I had to stay alive.

I am the legal guardian for our son, Nathan, 21, who’s been diagnosed with Asperger’s syndrome. He’s in a post-high school “transition program” to teach him life skills but he’s still fragile in many ways. I don’t know how he could manage without my support.

Paying for College on One Income

I also had to figure out how to pay for college for our daughter, Elsa, on what became just one income when Liz was fired from her job. I was a reporter at the Star Tribune owned and operated a jujitsu club on the side.

Most pressing, I had to figure out how to keep Liz safe and occupied during the day as I struggled to keep up with my beat, where I covered an unrelenting string of high-profile cases in federal court.

Something had to go.

I asked one of my jujitsu students to take over the martial arts club that I’d built up over 13 years. I agreed to keep teaching one day a week, mostly to keep my sanity, but had to relinquish the responsibilities of running the organization.

Next, I took the advice of a former boss who’d lost a wife at a young age, and joined a support group for dementia caregivers. The members would become a life raft in the dark days ahead, sharing understanding, tips and even soup.

I let a colleague arrange a meeting with a top financial planner to help me figure out the best way to pay for my daughter’s college tuition.

Liz’s Scary Car Incident

And I pulled the battery cable to keep my wife from driving. During a Mayo Clinic visit, we’d learned Liz would no longer be able to drive. But until her license was officially revoked, it had been hard to keep her off the road. So I resorted to meddling with the cable before I had to take my daughter on a college scholarship interview.

Unfortunately, while we were gone, Liz figured out how to reattach the cable, but failed to tighten it down. It was 11-below-zero when I got the frantic call from her sister saying that Liz was stranded. She had no gloves and was cold and confused. My heart raced. Luckily, a Good Samaritan helped Liz reattach the cable and she made it to her sister’s house, chilled to the bone.

The incident led me to do something I’d been putting off for six months. I called a lawyer specializing in elder law to learn how to apply for benefits like adult day care, personal care attendants and, for when the time would come, hospice care.

The attorney, Julian Zweber of St. Paul, reviewed the wills, do-not-resuscitate documents and powers of attorney forms that Liz and I had signed earlier in the year. Then he got down to business.

The Nature of the Disease

“Understand, you are always going to be one step behind,” Zweber said. “You will never quite believe that you’re at the next threshold. It’s just the nature of the disease.”

He explained that, in some cases, a Minnesota law shelters a small amount of the healthy spouse’s assets so the cost of care won’t necessarily drive the person into bankruptcy. Unfortunately, Zweber said, because Liz is under 65, the law does not apply to us. No similar shelter exists for middle-aged couples in a similar situation.

But, he said, if Liz could reduce her assets below $3,000, she could qualify for a Minnesota program called Community Alternatives for Disabled Individuals (CADI). It’s a complicated process and unless things are done right, you can end up in a financial wreck.

Protecting the Patient

The program, I learned, is one of a number of so-called “waivered services” offered in most states to people who are chronically ill or medically fragile, brain injured, or suffering serious chronic illnesses like dementia. They were started under President Ronald Reagan in 1981 so people who might not otherwise qualify for Medicaid services could tap those funds and remain in their homes rather than have to turn to more expensive institutions.

To protect Liz, Zweber said that we would have to get her to liquidate her assets and give them to me. My wife is normally a fiercely independent woman whose background in accounting has led her to read every line of every legal document she ever signed. I realized how sick she was getting when she glanced at the title to her van and signed it over to me, along with the house title and everything else I put in front of her.

Then I applied for the waiver. The process would not go smoothly.

Are you dealing with an FTD diagnosis? The Association for Frontotemporal Degeneration (AFTD) can help. Visit its website at www.theaftd.org for information and resources. AFTD also offers a helpline (866-507-7222) and email support.

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