One Woman’s Journey as a Caregiver to a Husband with Frontotemporal Dementia

Around the time Deb Scharper’s husband Tommy turned 38, he became forgetful, started to act odd, and lost interest in his long-time passion of driving and repairing cars. He grew paranoid and eventually suffered a breakdown in which he sought to harm his children and himself. The family had him admitted to a psychiatric facility and he was diagnosed and treated for depression. It would take until he was 44, that he was correctly diagnosed with frontotemporal dementia, a rare and progressive condition. He now receives full time care in a nursing home. We spoke to Scharper about the impact of frontotemporal dementia on her family, her experience as a caregiver, and why she has become an advocate who organizes support groups for other caregivers of people with the condition.

Daniel Levine: Deb, thanks for joining us.

Deb Scharper: Thank you very much for inviting me to talk with you.

Daniel Levine: We’re going to discuss frontotemporal dementia, how the condition has affected your husband, and your own journey as a caregiver and advocate. Let’s start with the condition itself. What is frontotemporal dementia?

Deb Scharper: Frontal temporal dementia is a disease that affects your frontal lobes, and your temporal lobes. It is a progressive decline in behavior, language, or even movement. But you have to remember with FTD, the memory is usually preserved so you don’t have the memory issues. And it typically has an onset in the mid-forties to 65 is when the typical onset is.

Daniel Levine: And how does this condition manifest itself and progress?

Deb Scharper: In our situation, it was pretty gradual. I noticed a decline in him probably at the age of around 38. I noticed that he wasn’t doing his hobbies like he usually did, and he was acting just a little bit different. I was lucky enough that I’ve been with him since I was in high school, so we’re high school sweethearts. And so, I could definitely tell a difference over the years of how he was changing. You know, some people think, oh, it’s midlife crisis. What’s going on? What can I do to help this situation? And everything I did did not help. And so we started looking to see maybe it was depression or those types of things. And then we finally got our diagnosis after, oh, let’s say eight years from the onset.

Daniel Levine: In the case of your husband, was he self-aware at all about the behavioral changes he was experiencing?

Deb Scharper: I don’t think he was at all. he was really into demolition derby cars. He’s a mechanic, he’s an amazing mechanic, and he and his brothers and his son would do demolition derbies and they’d even go into different sanctions of derbies and all of a sudden, he started selling his derby cars. He started not wanting to work on his cars and just became more, self-centered, I would say—just not wanting even to get out of the house, just acting really different than how he normally did act. And so that’s why we were thinking maybe more depression. Then he started having a hard time concentrating on his job and complaining. It was just a very bizarre change of personality in him.

Daniel Levine: I know you’ve since had contact with many other caregivers. Have you seen his progression being fairly typical of what others experience?

Deb Scharper: I’m going to tell you, if you know one person that has FTD, that’s the only person that you know of, of theirs. Everybody’s onset could be different. Everybody’s journey is different. But it’s so funny because when you finally have someone to talk to, you can connect so well and you can just kind of giggle at some of their behaviors and you’re like, thank God I’m not alone, this wasn’t just happening to me. But, yeah, it’s just everybody has their own journey with this. Some people start with PPA, which means that they can’t find the words to talk or they jumble up different words for like a fork or a spoon. Tommy’s was a behavioral FTD, so his onset was behavioral stuff such as paranoia, just delusional thinking that people were out to get him. Just very strange oddities. Also, uncleanliness, like, as it progressed, he really didn’t care about his personal hygiene, which was nothing like him at all. We even got to the point with him that I actually had to call him every day to make sure he was up, he was taking a shower, eating, and getting to his job on time. And I’m trying to do this working full time but trying to make sure that he can still be functioning in the society.

Daniel Levine: You mentioned it took eight years to get a diagnosis and you initially thought it was just depression, but what was that eight-year period like? How many different doctors did you see? Was he getting treated for things like depression that really weren’t the issue?

Deb Scharper: Absolutely. We started out in 2003 buying a repair shop. it was a shop that my husband worked at for 11 years and he was an amazing mechanic. By the year 2008, I noticed a real decline in his work abilities, like tasks, organizing, getting the jobs done, and those types of things. And then one day, I came after work to go work on bills and I came into the shop and he just came out from under the hood, looked at me with tears in his eyes and he goes, I don’t even know where to start. So right there, we knew something was going on and so we went to the doctor and all that jazz and they told us that it was probably severe depression, so of course [he was] put on depression pills that seemed not to help. So, we talked, and we decided that we’ve already been in this automotive business for five years and in debt. We can’t keep on going into debt if you’re not able to work on the cars properly or manage your employees or those types of things. So, we decided that it might be better if he would go get an eight to five job—punch in, punch out. And that’s what he chose to do. And he did a factory job for quite a while doing that. And then between that time of closing the business and getting a factory job, we were in at a physician’s office and they were just changing meds, thinking it was depression. By then, let’s go up to 2012 now, he went back into the automotive field, and he seemed to be very happy to be back in that field doing service writing and those types of things. But then that’s when the paranoia and the delusional [thoughts] started happening and he thought people were out to get him or he was stealing and things of that nature. So then, I asked for more help and we went to another hospital and he was put in for about a week trying to get some more answers. And, of course, still depression, they said and more medicine. During that hospital stay, he did lose his job. So then again, we’re out of a job. So within, oh, that many years, he was probably in and out of four different jobs because he couldn’t keep a job. He’d have him for about a year and then he would lose his job. And one time he lost his job for fighting. And my Tommy was never a fighter at all. That was a different personality trait for him too. And that’s where the behavioral part came in. He just couldn’t understand that he couldn’t just fight with somebody. So, he became like teenagers is kind of what I want to say. They just lose that knowledge to how to handle yourself in public.

Daniel Levine: At the same time, you’re getting drugs that are affecting your brain. Does this have any counter effect on frontotemporal dementia?

Deb Scharper: Absolutely. You know, because they would try to turn off those paranoia delusions. So then, you got medicated so much that you just sat in a chair and stared off into space. I’d be like, okay, now these meds are not working. What can we do now? in 2012 we had an episode that happened that actually, I came home, and it was the most heart wrenching thing. I was supposed to go to a swim meet and something inside my gut told me, do not go to that swim meet for our daughter. You have to remember we’re still raising kids at this time. He’s in his early forties and we have teenagers. And for some reason my gut just kept telling me, do not go, do not go. So, I came home to check on him because also, as I’m driving home, his work facility called me and said he didn’t show up for work today. So, I came home, and I had the wonderful “Dear Deb” letter. He was trying to hurt himself because he knew something was wrong and he could not ever get answers and help. So, we went up to another physician, another hospital stay and he was put in the hospital for about two months going for severe depression, doing all these things that we could do. And actually, this facility decided that ECT treatments were going to be the best priority for him. Well, and you know what ECT is, that’s electrical shock therapy. So this guy that has dementia is getting shock therapy on top of it, but we didn’t know he had dementia. So who knows if that sped up that process or not. He was up there for, like I said, about two months doing electrical shock therapy. He had nine episodes of those. and what electrical shock therapy does is it actually clears your mind. And then you have short term disability, short term memory with that. So, your brain has to heal then all over again so that, I don’t know if it like recharges you or what it does. And he came back home after those and didn’t work for about a couple of months so his brain could heal. But he did get a job after that. And he was pretty good. I would say for about a year he was actually talking to us. He was actually being part of the family again. But then after a year, then he started going downhill again and started the job losses and those types of things.

Daniel Levine: When was he finally diagnosed and how was he finally diagnosed?

Deb Scharper: He was finally diagnosed in 2015 at the age of 44. At this point we’re at the point that he couldn’t keep a job, he’d get a job and then he couldn’t. The last job that he had was a delivery company and his delivery company that he was delivering at was out of our area. It was in a town I would say about an hour away. And he had to find addresses and stuff. And he was telling me that he could not use GPS, he had to be able to read the map, and that he thought that they were watching him on TV, he couldn’t listen to the radio. So it really manifest at that point. And it got to the point at night that he wanted to make sure that he knew the maps. We would take the maps out, look at them. Then also he wanted to make sure he knew the manual because I think he was so afraid that he was going to lose another job. Finally he got a job again. And so he was so afraid and I would actually have to read him the manual because he could not get it to sink in. And so at that point we definitely needed more help. And we went to another physician to try and get more help with that.

Daniel Levine: Who actually diagnosed him in the end?

Deb Scharper: We are lucky enough that we’re really close to Mayo Clinic and so Mayo Clinic actually gave us the diagnosis and it was a shock, because in 2015 there were no treatments and there still isn’t treatments, but we’ve come a long way than what we were then. Once we got the diagnosis, it was go home, get your affairs in order. This is a progressive disease and he’ll never be better. And he was 44, I was 40. I’m just like, are you kidding me? What are we going to do? And so I tried to get like home health to come in and help us. I tried to get some agencies, well I couldn’t even get my insurance company to help us pay for these agencies to help him be able to stay in the home, to be able to make sure he was safe because at this point now he’s starting to get lost and I couldn’t trust him to stay home alone and not get in a car. So it was a very emotional time and very strenuous time for our lives.

Daniel Levine: Well, how did you cope with this as the wife? This was your high school sweetheart. You’re managing a family where increasingly the burden is going to be on you for raising these children and bringing in the income. What was that like for you?

Deb Scharper: It was a struggle, that’s for sure. At one point I actually had three different jobs to try and keep afloat. I’d make sure that he’d be home with Alyssa, but Alyssa was in high school at this time. So, you know, she’s working also. And we had to watch our pennies, you know, late on payments. It was just the most, I can’t even tell you, you were drowning, but you could keep just your nose above water. But you wanted to stay positive and happy because if you got mad or sad, then that would bring Tommy down into a different hole and he would get mad and sad. And so, I tried to keep my positive energy going as much as I could. But I even thought, okay, I even tried to do the Love Dare book trying to get him to fall back in love with me. I thought, well maybe it’s me, maybe I’m the one that’s being weird and all those types of things. So, I tried everything because at this point, you’re like, what is wrong with him? This is before he was diagnosed. I went to so many different doctors. I actually went to a doctor where I tried to change his like spiritual shakras and stuff. I mean I was going anywhere and everywhere to try and find out what was wrong.

Daniel Levine: What were you told? You were told that the condition was irreversible, that there weren’t treatments, that it was a progressive condition. Were you given any access to resources or connection to other caregivers at that point?

Deb Scharper: At this point, no. I’m hoping we’re changing the way that when we tell people about FTD, I’m hoping that we’re getting the education to the doctors: that you just don’t give them a pamphlet and say go home and get your affairs in order. I had no one and so I actually started going to the Alzheimer’s Association for a support group. My daughter and I would go. Remember I’m 40, she’s 18 and we’re going to these support groups for elderly Alzheimer’s patients. And it just was not a good fit for us. It was on a different level than where we were. So then, I started googling and trying to find an organization, and that’s when I found AFTD, which is the Association for Frontotemporal Degeneration. And I will say they were my lifeline and they’re the ones that got me through most of this.

Daniel Levine: You talked a bit about the economic pressure on you at some point. Your relationship with Tommy shifts from being your partner to you being his caregiver. What is your social life like at that point?

Deb Scharper: Very minimal, like we never went anywhere. We either were at work or church or I was home and I just remember, thinking back now, my house was spotless, my yard was—we had an acre—it was absolutely beautiful. I had the best flowers because that’s where I could put all my energy and control something because I couldn’t control my life. I couldn’t control anything but I could control a clean house and I could control my yard looking good. What a crazy looking back sickness! Now I think, oh my gosh, all the hours spent doing that. I mean, I was on a cycle and a schedule just to make myself safe. I feel sorry for our kids, for them to see all what was happening. But it was a way for us to cope. I didn’t really take him out in the social setting too much just because of his behaviors. After the ECT treatments, for that one year that he was doing pretty good. We actually joined a roller derby team, and he became a referee just because we needed to be able to have something that we could do together. I was trying to just get him out of the house and he really did latch on to that roller derby. And let me tell you, he loved it. And so, I’m so thankful that we found that for him his last year of not living with us.

Daniel Levine: How socially isolating was this whole experience for you?

Deb Scharper: Very socially isolated. I had my work and then I had my kids, and I feel like I really socially isolated my daughter because I never wanted her to leave me because I needed somebody to be with me at the house too. So, it was a double-edged sword for her. But she’s great. She’s 26 years old now and doing wonderfully. But you think back, that’s not the typical high school years that you want to have your kids to have.

Daniel Levine: You became involved with the Association for Frontotemporal Degeneration. How did you become involved in advocacy?

Deb Scharper: First what I did is I wanted support. There were no support groups really in the Midwest. I needed to get a support group going so I started with support groups. I have another family that lived probably about 40 minutes from me and we met each other at Mayo Clinic days. They have a day every year that they have an FTD conference, so I met her there. So, I knew I had one more person in my vicinity and so, I just started advertising for a support group, and we got about six people in our area, but some people had to drive an hour, hour and a half just to come to our support groups. And then I got one started down in Des Moines, Iowa, and that one’s a really good active, support group down there. So we got two now in Iowa, which I’m so thankful for.

Daniel Levine: And how important has it been to connect with other caregivers?

Deb Scharper: Oh, that is the number one thing that I’ve got to tell everybody is you need to find a support group. You need to find somebody you can talk to because we can shoot ideas back and forth with each other. I can say, well this is how I take Tommy to medical appointments. I keep him in a wheelchair, and I don’t let him get out of the wheelchair. I just keep the wheelchair going. So we give each other ideas of how we can control their behaviors a little bit. And [it’s] just a way that we can laugh and cry together because if you don’t know, if you’ve never lived with FTD or you’ve never taken care of somebody with FTD, it’s a bizarre disease that no one will understand.

Daniel Levine: What advice would you offer anyone starting down this path as a caregiver?

Deb Scharper: Number one, reach out to the AFTD. Alzheimer’s Association also is good, but AFTD specializes in the PPA, the behavioral and all those types of things. So, they’re more geared towards FTD and they have a wealth of information on their website. And it’s amazing that this organization is all like, I’m a volunteer for it. I don’t get paid for anything. I just do it about it because I want to help that next person never be lost how I was lost. So there’s a wealth of information on there. And then you can get on support groups and now we’re doing Zoom support groups, which are awesome because then you don’t have to leave your house. If you can’t leave your house, you can at least dial in and get together with more caregivers.

Daniel Levine: How is Tommy doing today?

Deb Scharper: Today he lives in a nursing home. He’s been there since 2015. I actually had to put him in because I couldn’t get any help in the home and it was not safe for him or us to be together. And so, it was a court order that he could no longer live with Alyssa and me. The sad thing is I’m in rural Iowa. There are no nursing homes for young dementia patients. And even now they’re closing more around me and I just don’t know where our future’s going to be with locked units. He lives two and a half hours from me. I go down one weekend a month and I also do my phone calls and stuff. And then his mom goes down one weekend a month. So, we always have two weekends that somebody’s with him. He’s nonverbal now. He does not talk. He has to be cued on everything to do, like to go to the restroom, to take a shower, to brush your teeth, you have to cue him. He paces. He’s a walker. He likes to walk, but yeah, he doesn’t talk at all. The last time I did hear his voice, about a month ago, but before that it was March of 2022. And I will tell you Covid wreaked havoc in the nursing homes. I mean, I see such a decline in Tommy just because he didn’t have that personal touch. He didn’t have me as his caregiver coming down to visit him. I was taken away from him for about eight months. I didn’t get to see him. And everybody says, well, why couldn’t you drive down there and go through the window? Like look at him through the window and talk. You don’t get it with behavioral FTD. If he would’ve seen me through that window, he would’ve broken the window to come through. He doesn’t get why I can’t be in the care facility. So we would do FaceTime and Zoom and all of those things to just be able to keep each other connected. But he lost his voice a lot within that eight months because he didn’t have that conversation and things back and forth.

Daniel Levine: And how are you doing?

Deb Scharper: Oh, I’m living, that’s for sure. I’m lucky enough that this is what I do every day. I think I’ve got to make today last and I’ve got to make it the best day I can because I have a loved one in a hallway, in a locked unit living, and I’ve got to make a change for him and for others. So I try to keep positive, try to do whatever I can to get the word out. And you know, the thing that I’m guilty of it too, when he was sick, and he was having his depression, or we thought that was it. I always pretended that we had the perfect life. I didn’t talk to people about it. I just kind of hid it away. And I’ve learned now that I’m not going to hide anymore. I’m going be loud and proud because we can’t keep mental illness behind closed doors. And I know that his is a mental illness, but it started out as them thinking it was dementia. And if I would’ve been maybe more active in telling people more things, that would’ve been better. Another thing that I would recommend to any family is if you get diagnosed with dementia or any type of mental illness, contact your local police. Because if the local police would’ve known that Tommy was ill with dementia, things wouldn’t have gone the way they would’ve. I think they would’ve been more compassionate because they thought that he was on drugs. And I kept saying, he’s not on drugs. He’s got dementia. And they would take so many drug tests when he had to go into a hospital and it was just the behavioral, it was not drugs. And so you have to be open and honest with your team. You have to have a team behind you.

Daniel Levine: Deb Scharper, frontotemporal dementia advocate and caregiver. Deb, thanks so much for your time today.

Deb Scharper: Absolutely. Thank you.

This transcript has been edited for clarity and readability.