Nancy Carlson is a children’s book author and illustrator who has published more than 60 books over the course of her career. Her life took an unexpected turn when Barry McCool, her husband of 30 years, started making a series of bad financial decisions that resulted in the couple selling off their home, their cars and other assets to pay off the debt McCool incurred. Eventually, McCool was diagnosed with frontotemporal degeneration (FTD), a form of early dementia that causes profound personality changes. For Carlson, McCool’s diagnosis was a relief; an explanation of the uncharacteristic behavior he had exhibited for years leading up to his diagnosis.
Today, in addition to continuing her work as a children’s author, Nancy devotes her time to telling her story in the hope her wisdom from years of dealing with FTD may help others.
Tell me a little about your life before Barry’s diagnosis
Barry had a successful design firm and made good money. Before FTD, he was so organized. Every T was crossed and I dotted. He really had a head for numbers. He looked ahead and planned, he knew where we were financially.
What were the first signs that something was wrong?
One thing about FTD, this particular form he had, which is behavioral, is that they don’t know they have anything. They never do. He expressed that he felt odd. He never could put his finger on it. He stopped paying taxes in 2006, which I had no idea about. It was probably five years after that it really became apparent. He was really failing on almost everything he did for my career. He was in charge of all my speaking and book contracts and he was doing a bad job. It was the perfect storm because it was also the recession (2008-09) so everyone was having a hard time getting contracts. I was about to divorce him. I met with my lawyer friend. She asked, “Well, what is he doing? Why are you so irritated?” He was hiding things, taking batteries out of the phone, borrowing money from people. She said, “It sure sounds like my dad who has dementia.” She suggested I bring him to a neurology clinic. I took him and he was diagnosed immediately with FTD (in 2011).
After the diagnosis, what steps did you take to protect yourself financially?
The first thing the doctor did when Barry was diagnosed was gave me the number for the Alzheimer’s Association 24/7 Helpline (800-272-3900). FTD and Alzheimer’s are different diseases but the advice was relevant for both and the steps you need to take are exactly the same: go to the Social Security office, go to the county, get his license taken away.
Always get their license taken away. You can fall into huge debt if they get into an accident. A license is the hardest thing to take away. It was the only thing Barry showed emotion over.
I also filed Barry for bankruptcy when he was first diagnosed. That really good divorce attorney friend gave me that advice. She also gave me Power of Attorney papers and told me to get him to sign it ASAP and get it notarized. That’s the first thing everyone should do, because people suffering from dementia lose the ability to write. Barry could initially, but six months later he couldn’t. That piece of paper saved me so much time and headache. No matter where I went I had that piece of paper that said I was the Power of Attorney.
What advice do you have for others with loved ones suffering from dementia?
My biggest mistake was putting him in charge of everything. I never even asked about it. He had me sign things and I never even asked what they were. Be aware of every part of your finances. Don’t be afraid to confront them. Listen to friends. Friends can see things that you don’t see. Barry was hired for two days to sell suits at Nordstrom’s and his boss said, “I have a bad feeling about you, you aren’t going to work out.” What did she see that I didn’t see?
How did you care for yourself during this process? What advice do you have for other caregivers?
It’s really the hardest job you’ll ever do. You have to take care of yourself. It sounds selfish, but it’s not. I’ve met so many people whose health declines because of their partner’s FTD. You can’t do anything if you’re not healthy.
Take it one step at a time. It’s so overwhelming, especially for people like me. I am an artist, I am not mathematically gifted by any stretch of the imagination. You can do it, just don’t get overwhelmed.
For me, therapy became hiking, going up north, writing, reaching out to friends. It’s really easy to become isolated when you have somebody you are taking care of.
The Association for Frontotemporal Degeneration (AFTD) was another great resource. I joined one of their support groups. There you are with people who have the same problem and it can get overwhelming, but the advice you get from others who have been there is really great.
Lastly, if you can afford help, you should of course get it.
What did you learn about the financial impact of dementia that might surprise people?
Even if you catch it early, the nursing home care, daycare costs are off the charts. If you haven’t taken time to put away money for care in the future, nursing home care will take every penny. Medicare pays for some services, but Barry was diagnosed in his early 60s. When he turned 65 that’s when Medicare kicked in.
I got really good at using those check cashing places, payday loans. Before Barry’s diagnosis … I had just deposited a big royalty check. I went to the bank later that day and it was gone. They (the bank) took it to pay back credit card debts. I realized then that I had to learn how to live [on cash] … and I hid it. I could not even remotely have him find it and go buy something.
So what’s next for you? Will you keep writing?
I’m writing a book about the whole experience with FTD. I’m on my fifth draft. The working title is “Losing Him, Finding Me.” I did a lot of hiking when Barry was first diagnosed and I was always lost and I was lost with this disease. But as things progressed, I stopped getting lost in the woods. I started to find myself thought this journey. But while I was finding myself, I was losing him.
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