GENTLE VANDEBURGH

Alzheimer’s is an insidious disease that takes an incalculable toll both on the person with the disease and their family. Each chapter presents new difficulties but also new opportunities for love and understanding. Alzheimer’s can overflow your cup with hard lessons that come after failure and perseverance.

Gentle VanDeburgh’s family has a history with dominantly inherited Alzheimer’s disease and she has the genetic mutation herself. Gentle knows she will ultimately have the disease like her father, Steve. Gentle spoke to me from her home in Oklahoma. We spoke of her family and growing up in Texas. Our children are similar ages and she joked that we might be interrupted at any moment by an animal or a child. We spent a couple of hours talking, laughing and crying together. Gentle courageously shared her journey with me. Together we share the determined optimism that something positive can be born from so much hardship.

She told me, “It’s through my dad’s maternal side. He’s the oldest of four, and we know three of four have the gene. My aunt died earlier from cancer, so we don’t know what her status was. His mother Jane was the oldest of three kids and two of three died with Alzheimer’s. The generation before that I think there were 13 children – and it’s either 9 of 11 or 11 of 13 had it. A devastating number.

He was 52, and we were like, okay, something’s wrong. We know what this is. He was one of the first family members who went and had the genetic testing done before his symptoms got really bad. That was 2011. My mom died suddenly in 2009, and I think had she been alive, he probably would have just been like, let’s wait and see. But I think he wanted to be more prepared, because we would be the ones taking care of him. Mom wasn’t there. I think that’s why he went ahead and did it.

He got almost a decade of being independent, more than his mom did, and his brothers. I think that was awesome, so he got to be with my sister and her family in Amarillo. He got to be with those grandkids and be close to them, which is wonderful. It’s good.

He died six weeks ago in January from COVID.

It was so strange to me to see how COVID was so different for him. He had no respiratory issues —he was fine—but it totally devastated his cognitive function within days.

He had just moved into the nursing home side, and a week or two later tested positive for COVID, and so they had to move him into the COVID unit, which is part of the nursing home. When he moved in there, he was still walking around and being nosy, getting into trouble. He would just sit down with the nurses and be like, ‘Hey, what are you doing?’ ‘Well, my job.’ Kind of getting in trouble. He was dressing himself, toileting himself, and then in a matter of days he was nonverbal.

He kept trying to walk, but he couldn’t, and so he kept hurting himself. It was this whole thing. It was just so fast.

When he first tested positive, they called us, of course, and they were like, ‘He’s tested positive, but he’s really doing well. He’s asymptomatic. We’ll let you know if anything changes.’ Obviously, we could call and talk to the nurses, but we couldn’t go visit him. In the space of a weekend, it went from that to ‘Get here! He’s not going to last much longer. If we move him to hospice care, you can come see him.’ That’s what we did, and we basically just dropped everything.

My brother and I live three or four hours away from where he was in Amarillo, and we just dropped everything. I picked him up and we went. By the next day we got to him, and he was almost unrecognizable, curled up on the floor. His knuckles were bleeding. He was all battered up. They had started the morphine and stuff, because we had said we know that he does not want to be on life support. He’s been very clear about that forever. We know what he wants. We need to let him go.

He had to start off on such a low dose of morphine, he was very agitated as they were moving towards that, and so my brother and I ended up that afternoon physically holding our dad down, because he was trying to get up, and he would fall. It was a nightmare. We saw him Tuesday, and then Thursday he passed away. We were with him that whole time. It was so weird. My brother and sister and I, we didn’t ever really say it out loud, but the second we saw him, we were like, well, there’s going to one of us here until the end. We’re not leaving him alone, because it was obvious that he needed somebody with him. I think he knew that we were there. He recognized my brother and talked a little bit. He just said, ‘I love you,’ to Josh, so I think he at least knew that we were there with him, but it was super, super shitty.”

After a long pause, Gentle told me she had been tested alongside her Dad back in 2011. She spent ten years watching her dad’s journey - and ultimately his death—knowing she would eventually travel the same path.

I asked Gentle how her husband Drew handles this and she told me, ”He’s very easy-going. I think he also expected it. He knew about this before we got married, because I was like, ‘I need you to know there’s some significant strings attached here.’

We were both of the same mind once Hazel (her oldest child) came along, that we would just make the most of what time we have, hoping that there will be advances, and if not a cure then at least some good treatment by the time we need it. In the meantime, just be here with them and give them that start in life. We decided early on that I would stay home with the kids, for the most part, and just enjoy them and be the mom.

I was lucky as a child to have an amazing mother who was always there for us and was there with us and all these great memories growing up in the country, just being a kid. I want that for them. One of the reasons I wanted to find out was so that I would know the timeline, in a way, and that I wouldn’t waste any time.

I just want to make sure and give them that, because I may not be here later. I think that’s how it’s affected both of us. Drew’s always been super, super supportive of being part of this study and making sure that happens, because I feel like that’s how we can be useful and contribute.”

I asked Gentle to tell me more about the desire to cram, to make the most of every single moment.

She replied, “I want to fill them up with memories and stories so that they have that going forward. In case I’m out of the picture, for whatever reason. Having that very real possibility of there not being a later, I feel like a lot of people are like, well, we’re going to work really hard, and we’re going to make a bunch of money, and then when we retire we can enjoy our grandkids. There’s a really good chance that I won’t be here for that, or at least not in any way that I can plan on.

We’re a little bit different in that way. We’re not so much focused on later. It’s more like, okay, what’s the best thing we can do for the kids right now? I’ve been really focused on not wasting time being unhappy, not wasting time being in a job that takes me away from my kids or that I don’t feel like is worth it. It’s been great.

I’m really, really passionate about kids being kids and getting to be, well, just kind of feral. I don’t like the structure of it all. I remember growing up. We had a dairy farm, so I grew up in the middle of nowhere, and we would just go play. Mom would be like, ‘Leave the house. Go, and when I honk the horn on the car come back.’ We had a big pasture that was ours, and my brother and sister and I and the dog, we would go off and spend all day just wandering around playing whatever games we thought of or adventuring, collecting cow bones, whatever. I don’t know how we never got bit by a rattlesnake, but it didn’t happen. I really don’t know how we avoided that, but I guess that’s what the dog was for.

I asked Gentle why she participates in the DIAN study (Dominantly Inherited Alzheimer’s Network). She explained, “It’s the only thing I can do that I feel makes any kind of impact for my future and for the kids. For my kids and everybody else’s. I’m not a scientist. I’m not a doctor. I don’t have that skillset. I’m not a legislator, all those things. This is what I can do. I can let them look in my head, and I can take these tests and go through this, which is not easy, but that’s what I could do. I feel like DIAN at least has done a really good job of at least making me feel like that’s helpful. I’m doing something, because the very worst thing was watching Dad get sick and watching Grandma get sick and being helpless, not having any kind of recourse at all and just having to sit and watch that happen, and wait for it to happen to you. That’s what the situation was a few years ago. Well, you just have to wait and see if your turn comes, and you don’t know, but now we do know.

I just feel like DIAN has made such a difference to so many families, because this research directly impacts everything, almost all the advances that have been made in the last decade as far as understanding this disease; maybe not treating it yet, but understanding it is from the data they’re getting from us, and without us we would still be just sitting and waiting. I don’t think anybody wants to do that.”

I asked Gentle what message she would like to give her kids if they can’t read or hear it for ten years – like opening a time capsule. She responded immediately,

“Don’t be scared!

I’d tell them the same thing I tell them all the time. They’re everything. I don’t know who I was before them. I definitely am happy to be their mom. I hope I teach them enough so that they can do whatever they dream - that they’ll have the courage to do that. And to always be themselves.”