The dementia grey area

Leanne Kaufman:

The Alzheimer’s Society of Canada has predicted that 2030 by nearly one million people in Canada will be living with dementia. Cognitive decline often begins years before a formal diagnosis. And this grey area, when these subtle changes emerge but remain uncertain, can be a time of real confusion and risk, especially when it comes to financial and legal decisions. Families are sometimes left wondering, is this normal aging, or is something more serious happening? Yet, despite its impact, this stage is rarely discussed, leaving many to navigate it alone.

Hello, I’m Leanne Kaufman, and welcome to RBC Wealth Management – Canada’s Matters Beyond Wealth. With me today is Nancy Carlson, a children’s book author and illustrator, who’s published more than sixty books over the course of her career. But her life took an unexpected turn when her husband of 30 years began making devastating financial decisions, forcing them to sell their home, their cars, and nearly everything they had built together. What first seemed like uncharacteristic and reckless choices were later explained when he was diagnosed with a form of early dementia. Today, Nancy shares her story to help others recognize the warning signs and navigate this difficult journey. Nancy, thanks for being here with me today to share your experience in this dementia grey area and why this matters beyond wealth.

Nancy Carlson:

Oh, thanks for having me. I’m happy to share my story.

Leanne Kaufman:

So we know that cognitive decline isn’t a linear thing, and it doesn’t happen all at once, and often starts with some subtle changes, like misplacing items, difficulty finding words, and then sometimes shifts in judgment. Can you tell us how it was when you first started noticing changes in your husband’s behaviour and what some of those early signs were that left you wondering if something wasn’t quite right?

Nancy Carlson:

Well, the changes at first were very subtle and his form of dementia is an interesting one. It’s called frontal temporal dementia or FTD for short. That’s how I’ll refer to it and FTD affects the frontal lobe of the brain, which is your executive functions and your personality. So the first thing you notice with somebody with this form of dementia is they become quite disorganized. Their executive functions are, they’re having trouble with that area in their brain and also their personality changes. For me, my husband was in charge of my career. I mean, he was the manager of it. He lined up my school visits, he worked on my contracts, and I realized that he was not doing a good job at managing my career. He was alienating some of my editors and it was very, very subtle at first. I eventually said: listen, you have to go find a job because you’re not doing the job that I need done. So this is coming from a person who was very, very organized and he was losing his organizational skills and another piece is his personality changed. So he had this dull affect, I guess you’d say. He also, this is a kind of a humorous part of it. I mean, we did learn to laugh at some of these things, is he would eat breakfast after breakfast after breakfast and I’d say, Barry, you just had breakfast. Why are you eating more? And he said, well, I’m hungry. But he couldn’t remember that he’d eaten, number one. And number two is that in that part of the brain, his brain wasn’t telling him he’s full. It was telling him, eat, eat, eat. But I think the organizational piece is the key to look for in your spouse or partner. If they start becoming totally unorganized, you’ve got a problem.

Leanne Kaufman:

So how did you handle those early conversations, I mean, other than asking him why he was eating so many breakfasts? How did you start, you know, speaking to him about the changes you were seeing?

Nancy Carlson:

Oh, yeah, that’s the best question. And if I had a time machine, I’d go back and rather than be angry all the time… I was just angry. I was like, I kind of assumed it was kind of since he was nearing his late sixties, maybe he was going through a midlife crisis or I don’t know. But I was just, rather than dig deep into the problem in the beginning, I just got irritated and angry. And being a true and tried Scandinavian from Minnesota, I’m really good at putting things away in my brain and not worrying about them. And that’s what I did. And it was a huge, huge mistake. I could have caught it a lot earlier. But instead, I stuck it in a cupboard in my brain and ignored it and went about my business of being an author and illustrator. And that was a bad mistake on my part. I figured if I just didn’t think about it would go away.

Leanne Kaufman:

So we alluded in the intro to the fact that it did have devastating financial consequences for you and seemingly your career as well. Give us some insight into what some of those decisions or situations were that you maybe looking back, you wish you’d handled differently when it comes to the finances or the legal aspects of what was going on.

Nancy Carlson:

Well, so we got in this routine as a husband and wife where he handled all the paperwork and all the business stuff and all the financial pieces of our life. If he brought a piece of paper to me to sign, I signed it. I didn’t ask why. Bad mistake. I wasn’t a true partner in our financial life. I let him deal with it. As a matter of fact, he would get our taxes prepared. And I found out and I’d sign it, and he’d say, here, sign this. And then he’d go meet with the tax person, and he didn’t pay taxes for ten years. I didn’t know that. But I take a blame in that as a spouse who just allowed him to take all the business aspects of our life. And I never asked a question. But I began asking questions when one day… Here, by the way, is one of the subtle things that Barry did in the beginning of FTD is he would always meet the mailman, always. So we both worked out of the house, and he always was standing there when the mail carrier came, and he grabbed the mail first. I didn’t really think about it. I mean, oh, well, he’s kind of bored. He’s obviously wanting to see if there’s a check in there. That’s the way I thought about it. But it turns out he was hiding these things from me. He had enough in his brain to tell him, I’ve got to hide this from Nancy or she’s going to be really mad at me. One day I did get the mail, and I found letters from banks, credit cards, and some letters from our friends who he had borrowed money from. And he was hiding it all from me. And he was doing a really good job of hiding for a long time. And I guess if I had intercepted the mail earlier, again, I could have maybe caught it. But my career is one where I also travel a lot. So he was left at home for weeks on end as I did book tours. And it was easy to miss some of these things. But it eventually caught up to him and to us, and he got to the point where he could not hide it anymore. His desk looked like it was a bomb had gone off. This is someone who never had a paper out of place. And pretty soon there was stuff everywhere. No bills were paid. And then obviously, I went and got him to a neurologist through some advice of a lawyer friend of mine.

Leanne Kaufman:

Yeah, tell us about that. Tell us what some of the first steps that you took were in order to protect Barry and your family, really, like once you realized that something wasn’t right.

Nancy Carlson:

So my lawyer friend, I explained to her that we had all this debt. And she said, you know, it sounds like he has the same thing my father had, which was similar to FTD. She said, bring him to a neurologist. And that was when I really started to become proactive in our financial piece and in trying to protect him as well. So he was diagnosed with FTD. And I immediately went and got power of attorney. And that was through my lawyer, I would never have known even about power of attorney. I got that right off the bat. And through my nice friend, who’s the lawyer, she helped guide me through other ways that I can protect myself. But, you know, you can’t protect yourself from the IRS here in the United States  so I had to come up with a plan to pay them back.

Nancy Carlson:

And the thing is, we had already sold our house before his diagnosis. So that was another eye opener to me is when we sold our house, I realized we had two mortgages on it, not just one. And it just was one thing after another. It seems like such a bad dream now looking back and it seems so long ago now. But yeah, there were so many hurdles along the way that… This is someone who just draws pictures. I don’t even know how to do multiplication tables barely. So for me to start handling finances and all this was it was it was really hard. 

It was harder on Barry because he had enough of a realization that he couldn’t do it anymore. And then he was getting sick. But one thing good about FTD is they really, really don’t know that they’re failing. They might in the beginning, but then they forget about it. Whereas Alzheimer’s, the Alzheimer’s patient would be more aware of what they’re losing. Where FTD, he once he gave me all the finances, he could have cared less. He didn’t think it was a problem. Good for him.

Leanne Kaufman:

Yeah, yeah. So what advice would you give to other families who might be noticing some changes in their loved ones so that they could maybe put safeguards in place a little bit earlier or as soon as possible?

Nancy Carlson:

Well, I guess look for the disorganized piece. And that would come with Alzheimer’s as well. If your normal loved one is super organized and they’re not and things are kind of getting out of control that way. Go right away. Just stand up to them and get strong and go get them diagnosed. If there is a problem, it’s better to catch it early. And don’t just be angry. Take charge, I guess. And I didn’t do that quickly.

Leanne Kaufman:

Well, but hopefully your story and your message that you’re sharing so publicly and have been sharing helps other people from being in the same situation. Why don’t we pivot to talk about you for a minute and specifically you as a caregiver? You know, not only are you in the throes of dealing with all the financial stuff at this time, but you’re also presumably starting to have to navigate becoming a caregiver to your husband and then maybe starting to grieve the person who he once was as his personality changes. How did you care for yourself or did you care for yourself during this process? And what advice would you give to others in a similar position?

Nancy Carlson:

I did care for myself. I have chronicled our journey with my art and with writing through a blog. And you’d think writing about it would be like, why do you want to write about it? But it really helped me figure out how I was feeling. And it also helped me forgive him and me for what we were going through. It just, it really helped me figure out what I was feeling, I guess. So if, if a person has a creative bent, or if they maybe just like to write a little poetry now and then, or maybe even knit or something, find something for you to do. Another thing I did was I got really into hiking. I know it’s just, just going out into the woods and spending an hour or two with myself really, really helped me think about things, plan. Also I joined a support group and I think that was really important. I learned so much about the finance piece. I learned about adult daycares through the support group and other important things, just meeting with people going through the same thing really helped. And I am not a support group person at all. Like I don’t really like to talk about my problems, but boy, it was sure helpful. And I met really good friends there. And the financial [piece], some people were going through it. Like me, some had figured out the financial piece and could guide. So joining a support group helped me, hiking and just creating.

Leanne Kaufman:

Well, I think that those are all good pieces of advice for anyone in a caregiving role. The creativity, the connection with nature and connecting with others. You know, the financial part of it, of course, harkens back to some of the messages that we try to deliver to our clients and the Canadian public around planning and getting in front of some of this planning before it becomes a crisis. So hopefully those listening may also heed some of that advice and make sure that those things like the power of attorney that you were talking about are in place well before there’s a crisis and events happen like you experienced. Nancy, if you hope that listeners just remember one thing from the conversation you and I are having today, what would that one thing be?

Nancy Carlson:

I think the biggest takeaway with my journey with FTD is ask questions, become a partner with your partner on your financial life. This is something I did not do. I can’t tell you the times we met with our accountant and I daydreamed the entire time, stared out the window and thought, boy, I wish I was outside. Why am I here? And I feel bad that I pushed all that on him. So become a full-fledged partner with your partner on your financial life. Really important.

Leanne Kaufman:

That’s great advice. Well, thank you so much, Nancy, for joining me today to share a brief look into your journey through this uncertain time in your life and the lessons you learned along the way and why this matters beyond wealth.

Nancy Carlson:

Thank you. Thanks so much for having me.

Leanne Kaufman:

You can find out more about Nancy Carlson at nancycarlson.com. If you enjoyed this episode and you’d like to help support the podcast, please share it with others, post about it on social media or leave a rating and review. Until next time, I’m Leanne Kaufman. Thank you for joining us.

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