Navigating Love and Loss: Ken Cullen's Intimate Journey Through Frontotemporal Dementia

When your loved one's personality begins to fade away before your eyes, the reality can be as heart-wrenching as it is bewildering. Ken Cullen opens up to us with a raw and intimate account of his wife’s life-altering diagnosis of frontotemporal dementia—a condition that's recently gained attention with celebrities like Bruce Willis and Wendy Williams sharing their own battles. Ken's narrative pulls back the curtain on the day-to-day experiences, from the initial confusion over his wife's altered interactions with a family friend to the alarming call from his daughter's pediatrician that propelled them towards seeking medical answers.

Embracing both sorrow and snippets of joy, the episode traverses the spectrum of emotions that accompany a journey through dementia. Ken doesn't shy away from the tough questions or the harsh realities of the disease, recounting the punch of a caregiver's bleak prognosis and the determination to see his wife as the vibrant person she remained. Yet, within the shadows of struggle, we find light in their story—moments of participation and laughter as they plan their daughter's sweet sixteen, a celebration that also became an anchor in a sea of uncertainty. Ken's story is not just one of challenge, but also of love, resilience, and the power of family unity in the face of adversity.

Transcript

Speaker 1: 0:05

Okay, my name is Ken Cullen and I'm here today to talk to you about my wife's dementia journey, as we mentioned earlier. You know the ups and downs and the highs and lows of this disease, which kind of you know I'll be honest with you. It kind of weighs you down. I mean, I'm going to go back to the year 2016, when my wife was first diagnosed, kind of happened unexpectedly. Basically, what happened is a friend of mine had stopped by, who I haven't seen in a while, and he came by and you know, and my wife looked at him and didn't really say hello to him and she knew him well from my wedding party. And you know, my friend said hey, kenny, you know what's going on with your wife. You know, she looked at me, she smiled at me. It was almost like she looked right through me. She didn't really know who I was. I said, yeah, you know, darren. I said I'll be honest with you.

Speaker 1: 0:57

I kind of noticed some changes in our behavior over the last two to three weeks, maybe a little longer, but I was kind of holding off to see if I was going to go any further with it as far as testing. What happened afterwards is my daughter had to go to the pediatrician and my wife took her. I was at work and what happened is the my wife's pediatrician ended up calling me at work and said Kenny, I just want you to know that. You know I'm writing the information down for your wife to get filled at the pharmacy and she's not really grasping it, she's not understanding. She's telling me to write it down again and repeat it two or three times. He said, ken, look, something's up. You know I have an idea what it is, but I don't really want to want to delve into it too much. But do me a favor, go get your wife tested, go get an MRI or a CAT scan and let's see what really is going on here. And I kind of knew already that there was something going on, but again I was kind of like holding off, I didn't want to, you know, jump the gun or anything. And sure enough, mri confirmed that there was some deterioration, some atrophy behind the right eye and ultimately was diagnosed with something called front lobal dementia, which actually is what Bruce Willis and now Wendy Williams was just recently diagnosed with. So you know the early stages of this disease.

Speaker 1: 2:16

I went to a caretaker, I went to talk to some professional people about it and they kind of ran me through like what you know, what's going to happen, what to expect? It's a journey of it could be five to 10 years and you're going to go through a lot of different changes over that time span. And when I left the first meeting with the caretaker, I kind of left it kind of aggravated, because she kind of had it to the point where it was like you know, she had my wife kind of like gone in a year, like oh no, no, no, no, you know, this is what, this is what you could expect. I don't think she meant it to be so harsh, but the way it came across to me it was like she had her, like you know, maybe dying in a year. And I said my wife's nowhere near that, she's funny, she's laughable. We go out to eat, we go to shows. But there were changes that I noticed.

Speaker 1: 2:59

So, again, after the diagnosis, you know, we kind of just, we just kind of we rode, we rode along with it. My daughter was getting ready to turn 16 at the time, so we were planning a sweet 16 party and my wife got all involved in all the events and all the you know all the helpful aspects of it the plan, the party and the plan, the event and again, it wasn't very noticeable. But you did see some changes forgetfulness, repeating herself a lot, maybe losing things, losing key. She was still driving at the time, we still had a driving. She still was driving, maybe for maybe two, maybe three years up to that time, so I'd say from maybe 2016 up to about 2018.

Speaker 1: 3:43

And then I decided that at that time, I think we better pull the keys back, because I think it was starting to get to the point where, you know, I was afraid she was going to get lost somewhere and I actually sent her to one of her primary doctors and when he got, when she got there, he told me he says Ken, he says look, I don't even want her to drive home, I'm going to get a cab, send the home. My wife got nervous, she pulled out, she took the key, she ran out, she drove home on her own. The doctor called the cops, they called me at work. It was a whole big fiasco. But long story short, at that particular time my wife was still okay to drive, but I just felt maybe it was time, maybe that was enough, was enough.

Speaker 1: 4:21

My daughter had her license then and it was time for her to take over the range. She started driving and again my wife was kind of hesitant and aggravated because she didn't want to stop driving. I had to explain to her look, laura, there's some changes going on with your behavior and I just don't want to take a chance on an accident or you're getting lost somewhere. And again she was in denial but eventually she accepted it, reluctantly, but she accepted it and we just went from there with it. And again my daughter at that point a little older, understanding what was going on, she was helpful with me. And again my wife was still cognitively okay, but again slipping at times.

Speaker 1: 5:09

But again, not to get into too much of it, but as time went on, this disease is progressive and the atrophy is going to. The problem with the atrophy behind the right eye is going to continue to deteriorate and what happens is something called the TAU. It's a tau protein which is what affects the brain metabolism and as that gets eaten away further, this is really what happens. And until, obviously, when you get to the end of the road, whenever that is again and there's no timeframe everybody's different. I've heard people live with this disease for 15 years and other people went maybe five or six.

Speaker 1: 5:49

So my wife at this point is at going on eight years and although there has been some further changes, like verbalization, has now pretty much stopped, but she functions. She can eat, goes to the bathroom, she showers, she does all these things. She can dress herself. Sometimes she needs assistance, but for the most part she's hanging in there. But yes, you definitely see the changes. Let's say I was going to say year to year. It could be month to month. I see different things that she's doing in the house that she never did before.

Speaker 1: 6:22

I said where did that come from? Well, this disease evolves, it changes and you have to change with it. You have to learn to adjust and you have to learn to have patience. Patience is key Because if you don't have patience with this disease, you're going to crack. You have to just take a step back, take a deep breath, say okay, this is what's going on now. And the other key factor is you've got to have help.

Speaker 1: 6:45

If I didn't have my daughter to help me along, I probably would have to hire a nurse or an aide. Fortunately I have my daughter, rather, who's still in college, and we bounce off each other. We help each other out so we get it done. I don't have a professional in the house. I had that experience with my mother-in-law years back and it didn't work out and, being that I'm retired, I don't really need anybody. I'm here to do whatever I can do to help her and I'm going to close it out here Again. My name is Ken Cullen. I'm going to close the show here now and we'll talk about it further up the road. I got a lot more to discuss. Just want to let you guys know that there are changes and there's a lot more to learn about this disease. I just want to keep people educated and informed and I appreciate your time and hope to talk to you soon. Thank you.