#34: Where the Gospel Meets Dementia

#34: Where the Gospel Meets Dementia

Note: The Love Thy Neighborhood podcast is made for the ear, and not the eye. We would encourage you to listen to the audio for the full emotional emphasis of this episode. The following transcription may contain errors. Please refer to the audio before quoting any content from this episode. 

JESSE EUBANKS: Ben Mast was a junior in college. He was sitting in class on a cold Wednesday morning in January.

BEN MAST: I was sitting in my writing short fiction class, and, uh, there was a knock at the door and the professor stepped out and then came back in and asked me to come out.

JESSE EUBANKS: And this professor told him, ‘Something’s happened and you need to call your dad — right now.’ Now, this was pre-cell phone era. So Ben leaves his college class, goes to one of the school offices, and calls his dad. And his dad tells him something serious has happened.

BEN MAST: My grandfather had disappeared. 

JESSE EUBANKS: Now at the time, Ben and his family lived in Michigan, but his grandparents lived in Denver, Colorado. And the day before, his grandfather had gone out like he always does.

BEN MAST: So he was a, a union plumber and he was retired, but he still drove into downtown Denver every Tuesday to go to his union meeting to hang out with the other plumbers.

JESSE EUBANKS: But then, he didn’t come home for dinner. In fact, he never came home at all. And so Ben’s grandmother had called the cops, and the search began.

BEN MAST: The police are there. My father flies in. His brother drives down from the mountains. And the whole night went through and he didn’t show up.

JESSE EUBANKS: Now it’s Thursday morning. Ben’s grandfather had been missing for two whole days, and things aren’t looking good. Then, Ben’s family gets another phone call.

BEN MAST: The next day, a sheriff called and said that they had found him. He was doing fine. He was alive, but he wasn’t in Denver. He was in a little town called Birdsong, Kansas.

JESSE EUBANKS: When Ben and his family looked at a map, they realized that Birdsong was 250 miles away from his grandparents’ home. What in the world was he doing there?

BEN MAST: So he drove and he drove and he drove until he found a little farmhouse. He parked the car, went inside, found a comfortable chair, sat down, and fell asleep. 

JESSE EUBANKS: The house he had gone into was occupied by an elderly woman who lived alone. So when the woman heard the front door open and shut, she came out to see who it was and she found a strange, tired, and confused man sleeping in her recliner. So the scared woman — she called the cops, and the cops showed up and slowly figured out who this man was and reconnected him with his family. And everyone was relieved that he was okay, but it still didn’t explain the oddness of it all. Why had he driven 250 miles to an unknown house just to take a nap? No one really knew. In fact, the only thing Ben’s grandfather kept saying to the cops and to his family once he was back home was this.

BEN MAST: ‘I don’t see what the big deal is. I went for a drive.’

RACHEL SZABO: Yeah, this is incredibly peculiar. No one just goes for a drive and enters a stranger’s house and sits down and takes a nap. That’s really weird.

JESSE EUBANKS: Yeah, it is weird. And Ben’s grandfather had been doing, y’know, other weird things too — ignoring when people spoke to him or asking a question and then two minutes later asking the same question again — and the family had just written it off as old age. But after his disappearance, something clicked.  

BEN MAST: And so that was when we were faced with the real possibility that this was something more significant.

JESSE EUBANKS: There was only one explanation for it all, and it was an explanation that no one in Ben’s family wanted to be true. But there was no way around it. Ben’s grandfather had dementia.

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JESSE EUBANKS: You’re listening to the Love Thy Neighborhood podcast. I’m Jesse Eubanks.

RACHEL SZABO: And I’m Rachel Szabo. Every episode we hear stories of social action and Christian community.

JESSE EUBANKS: Today’s episode is where the gospel meets dementia.

RACHEL SZABO: Now, dementia is a really broad term for the loss of memory, language, and other cognitive skills, and there’s many forms that dementia can take. But for our stories today, we’re gonna mainly focus on one particular type — and that is Alzheimer’s disease.

JESSE EUBANKS: What is happening inside the brain of someone with Alzheimer’s? Are our loved ones still themselves when they seem to act completely different? And what role can our faith play when we no longer remember who Jesus is? Welcome to our corner of the urban universe.

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RACHEL SZABO: Okay Jesse, do you personally know anyone that has dementia?

JESSE EUBANKS: My stepmother had early-onset dementia.

RACHEL SZABO: Can you describe what interacting with her was like?

JESSE EUBANKS: Yeah, I mean my stepmom was like a mover and a shaker. Like she oversaw a large staff. She was a really competent businesswoman. And then all of a sudden, y’know, in her early 60’s, we think that she had a stroke and her whole personality started changing.

RACHEL SZABO: So actually what you just described — that’s not an uncommon experience. More than five and a half million people in the United States are living with some form of dementia, and the prediction is that that number of people will double within the next 30 years.

JESSE EUBANKS: Well and it’s not just those, y’know, living with the disease who are affected. Each year more than 16 million people provide some sort of care for a family member or friend living with dementia. Y’know, these are not paid professionals. These are folks like you and me simply taking care of somebody that they know.

RACHEL SZABO: Right. So, I am not super great at math, but my phone has a calculator on it. And so I’ve done some numbers, and here’s what all of these numbers boil down to. The number of people in the United States whose lives are in some way significantly impacted by dementia — meaning either they live with it or they are taking care of someone with it — that number is roughly six percent of the total population. 

JESSE EUBANKS: Okay six percent. That’s actually not as high as I thought it’d be.

RACHEL SZABO: Yeah okay, but here’s the thing that gets really alarming. So back in 2014, that number was 1.6 percent. So what that means is, within the last six years, the number of people impacted by dementia in our country has more than tripled. 

JESSE EUBANKS: Whoa. What in the world? What’s causing that?

RACHEL SZABO: I mean it’s pretty simple. As more of the population ages and also as technology becomes more advanced and we can detect diseases better and as we continue to live longer, the presence of dementia —  it just gets higher.

JESSE EUBANKS: Well, and I guess that’s why this is such an important topic. Y’know, in the United States, older people identify as Christians more so than younger people. 

RACHEL SZABO: Yeah, so actually people over the age of 40 — they’re 17% more likely to identify as Christian. 

JESSE EUBANKS: Yeah, so historically our church is full of, y’know, these older, seasoned folks. As we continue to see dementia sweep across society at large, we’re also gonna see those same effects within our church communities.

RACHEL SZABO: Exactly. In fact, today it’s estimated that 36% of those over the age of 70 within the church already have some form of dementia. And, like as we’ve seen, those numbers — they’re only gonna get higher. And so the question becomes — are we prepared to help those within the church who will live their lives with dementia?

JESSE EUBANKS: Well, y’know, one common characteristic of dementia is forgetting, but people with dementia are not the only ones who forget. All throughout history God’s people have struggled with forgetting. 

All throughout the book of Exodus, Moses commands the people to remember — ‘Remember the day in which the Lord brought you out of Egypt. Remember the Sabbath day. Remember the covenant God has made with you.’

RACHEL SZABO: Well and a lot of times, this call to remember was accompanied by something physical, like the whole meal of Passover was supposed to help them remember being delivered from Egypt. And God told Moses at one point to put some manna in a jar so that the people could remember that God provides for them.

JESSE EUBANKS: But even with so many reminders, God’s people still forgot. I mean, think about it. They forgot him when they were at the Red Sea. They forgot him when they were in the wilderness. They forgot him when they were exiled in Babylon. We can forget God when things are going well and we think we don’t even need him or we can forget him when things are hard and we’re lost and are suffering.

RACHEL SZABO: Yeah, even though God gave them so many reminders, the whole story of the Old Testament is a story about God’s people repeatedly forgetting him in their suffering.

JESSE EUBANKS: And as anyone who has experience with dementia knows, a dementia diagnosis brings incredibly sudden and incredibly hard suffering. 

RACHEL SZABO: Which is actually what a woman named Jane Gumbiner was soon gonna find out. So Jane met her husband Hal in college. Hal was in school to be a veterinarian while Jane was still in undergrad. And they liked each other, so they started dating.

JANE GUMBINER: We were just comfortable in each other’s company all during those dating years, and it was just kind of natural. And after about two years, he asked me to marry him and I said ‘Sure.’

RACHEL SZABO: Y’know, one of the things that Jane admired about Hal was how he would encourage her to grow in her relationship with Jesus.

JANE GUMBINER: We talked a lot. We spent a lot of time just talking about things that were important. I learned a lot from him about Christ and Jesus and how important it was. 

RACHEL SZABO: In fact, church ended up becoming a really big part of their life. So after they got married, they joined this small church in Florida that was just starting up. And so any time the church doors were open, Hal and Jane were there.

JANE GUMBINER: He was an elder forever or in some kind of leadership, and I was Sunday school teacher or fill in the nursery or something constantly. So that was pretty much our whole lives were focused around building that church, being in that church, serving that church.

RACHEL SZABO: Hal and Jane had two daughters, and they raised their daughters in this church. And to Jane, life seemed pretty perfect — until one day Jane kept noticing that something between her and Hal just seemed off. So eventually, y’know, their daughters, they grew up and they moved away, but Hal and Jane remained at this church in Florida. But as they continued to age, their conversations just weren’t what they used to be.

JANE GUMBINER: We would have had conversations like, ‘Oh, I don’t remember that.’ And I said, ‘Oh, well, I’m pretty sure I told you.’ And he says, ‘No, you didn’t.’ And so I would think, ‘Oh, well, maybe I’m just not remembering that I — you know, I thought I told him, but I didn’t.’

RACHEL SZABO: Now granted, they’re older than they used to be and so some of that is normal, but it kept happening. And this actually really caused some alarm in Jane because dementia runs in her family.

JANE GUMBINER: My parents — both my mom and my dad’s side — has a lot of that.

JESSE EUBANKS: Oh, so she’s worried that she might be getting dementia?

RACHEL SZABO: Yeah. So dementia isn’t necessarily genetic, but research does show a higher likelihood of getting it if you have a close family member with it. And things are seeming strange, and Jane is worried something is wrong with her.

JANE GUMBINER: When I started noticing things, I assumed it was me, um, probably for a good year.

JESSE EUBANKS: Wow, so she spent an entire year thinking, ‘Something’s wrong with my mind. I might have dementia.’

RACHEL SZABO: Yeah. So eventually one of their daughters suggests, ‘Hey, why don’t you move up to Louisville’ — that’s where their daughter lived at the time — ‘be closer to family in case you need help with anything.’ And they thought that was a good idea, so the daughter comes down to Florida and helps them pack up the house because she and her husband were in the military. They’re like expert packers. So she does that, and when the packing is done, their daughter goes back home. And then Jane gets a phone call. 

JANE GUMBINER: She came back to Louisville and spoke to my son-in-law, and he called me and told me that I needed to get into the doctor. 

RACHEL SZABO: But not for her — actually for Hal. 

JESSE EUBANKS: Oh. So this whole time she’d been thinking something was going on in her mind, but it was actually her husband. 

RACHEL SZABO: Yeah, so while the daughter had come to help them pack, she had noticed some strange behaviors in Hal — forgetting, not acting like himself, repeating himself all the time. She was concerned. And, y’know, Jane had noticed these things too. She just thought they were happening in her mind.

JANE GUMBINER: And I kept saying, ‘Are you sure it’s not me? Are you sure it’s not me?’ Because something was going on, but I assumed it was me.

RACHEL SZABO: So that’s actually a really common reaction when people start to exhibit signs of dementia, is the other family members will think something’s actually the matter with them because to admit that somebody has dementia — I mean, that’s a really big deal.

JESSE EUBANKS: Yeah.

RACHEL SZABO: And it’s something that no one really wants to deal with.

JESSE EUBANKS: Yeah.

RACHEL SZABO: And so if you can just explain it away and think, ‘Oh, there’s something the matter with me. I’m not noticing this right. I must be forgetting’ instead of it being, ‘No, this person has dementia.’ It’s a lot easier to do that.

JESSE EUBANKS: Yeah, and also I’m imagining too, like, in a lot of these cases you’ve got an older couple — frequently the majority of their day is just the two of them, so there’s a 50/50 shot. Is it the other person or is it me? At least with me, I feel like I could control it more. But if it’s the other person, that’s a particularly sad and hard thought.

RACHEL SZABO: But, y’know, Jane’s daughter and her son-in-law, they were insistent, y’know, ‘Please get dad in to see the doctor.’

JANE GUMBINER: I did make an appointment with our GP and took him in, and then he referred us to a neurologist.

RACHEL SZABO: And the neurologist told them, ‘I think Hal has Alzheimer’s.’

JANE GUMBINER: It was just kind of stunning, but I just sat there and we went home and processed it. It was probably 24 or 48 hours before you start really facing the, ‘Okay. That life’s over. Now what?’

JESSE EUBANKS: Yeah, I mean think about it. Imagine that every time that you go to your house, every time you pull up, on the outside your house is your house. Y’know, the doors are the doors, the paint colors are the paint colors, the bushes are the bushes. It is your home. And it’s the sensation of being home every time you pull up, but then all of a sudden one day you start noticing that little things change. The washcloths, you can’t find them. You don’t know where the electrical box is. Suddenly your dog doesn’t run up to you anymore. And the next week something else changes. The week after that something else changes. But every time you pull up to your house — it looks like home, it’s supposed to feel like home. But when you walk through the doors, it’s not the same house anymore. That is what it’s like watching somebody that you love suffer from Alzheimer’s. 

RACHEL SZABO: Yeah, it’s incredibly painful. So much so in fact that Jane rarely talks about it.

JANE GUMBINER: I don’t let myself visit this time very often, so…

RACHEL SZABO: Y’know, a survey by MetLife found that Alzheimer’s is the second most feared medical condition among American adults, topped only by cancer.

JESSE EUBANKS: Yeah, and for good reason. I mean when I think about the potential of getting Alzheimer’s disease, it’s terrifying. The idea of my body breaking down is scary enough, but the idea of my mind breaking down and me forgetting the people that I love the most in this world — that is a terrifying thought.

RACHEL SZABO: Yeah, and so I’m wondering, y’know, what makes our brains do that? Why does this happen?

JESSE EUBANKS: Well, I actually have some answers for that. Coming up — a journey inside the brain and what it’s like to live with Alzheimer’s. We’ll be right back.

COMMERCIAL

JESSE EUBANKS: Welcome back to the Love Thy Neighborhood podcast. I’m Jesse Eubanks.

RACHEL SZABO: And I’m Rachel Szabo. Today’s episode is where the gospel meets dementia. So we just heard from Jane Gumbiner, whose husband Hal was diagnosed with Alzheimer’s. So the road ahead is gonna be difficult for both of them. But my question is — what causes Alzheimer’s in the first place? You know, why do some people’s brains just turn against them? And Jesse, you said that you have some answers for that?

JESSE EUBANKS: Yep. Okay so there’s a lot about Alzheimer’s that we don’t know, but there are actually some things that we do know. Okay, so do you remember the story I told you at the beginning of the episode about Ben and his grandfather?

RACHEL SZABO: Oh yeah.

JESSE EUBANKS: Okay, well Ben actually went on to become a licensed clinical psychologist with a specialty in gero-psychology. Basically, he’s an expert on the brains of the elderly. Here’s what he had to say.

BEN MAST: When we talk about Alzheimer’s disease, most of the time we’re talking about the symptoms — the forgetting, the confusion, the changes in ability to communicate in the later stages, the ability to walk, feed oneself, speak…

JESSE EUBANKS: But the symptoms are caused by something so small, most modern scans actually can’t detect it. 

BEN MAST: Those symptoms are caused by two very specific changes in the brains of people with Alzheimer’s disease. We call them plaques and tangles.

JESSE EUBANKS: And these plaques and tangles can really only be seen with a microscope. Okay, so do you remember the Magic School Bus?

RACHEL SZABO: I love Magic School Bus.

JESSE EUBANKS: Yeah, like where they would go on a journey inside the human body.

RACHEL SZABO: Miss Frizzle.

JESSE EUBANKS: Yeah.

RACHEL SZABO: Yes.

JESSE EUBANKS: Okay, let’s go a little Magic School Bus style and head inside the brain. So if you’ve ever taken the time to think about our brains, it’s fascinating. A baby’s brain will triple in size within the first year of life. A full grown brain weighs about three pounds.

RACHEL SZABO: What if you have a small head?

JESSE EUBANKS (laughs): What are you talking about?

RACHEL SZABO: I have a tiny head. Like does my brain weigh three pounds? I don’t know if three pounds fits in my head.

JESSE EUBANKS: I’m sure that your brain is fine.  

RACHEL SZABO: Okay.

JESSE EUBANKS: And 75% of our brain is actually water. Inside this three-pound water machine, we have neurons — one hundred billion of them firing all sorts of data and electricity all over our brains. And they form a sort of communication network like a giant web.

RACHEL SZABO: The internet before the internet.

JESSE EUBANKS: Exactly. And when different chemicals pass between these billions of neurons, different things happen — we move, we speak, we have thoughts or memories.

RACHEL SZABO: Like that’s happening right now. Like chemicals are going back and forth in our neurons in our brain as we’re sitting here talking.

JESSE EUBANKS: Exactly. I mean that’s a very simplified version of how our incredibly complicated brain works. Now both inside and outside of these billions of neurons are two kinds of particular proteins.

BEN MAST: They’re part of a normally occurring set of proteins in the brain, amyloid and tau.

JESSE EUBANKS: Now these amyloid and tau proteins are there to keep your brain function healthy. But sometimes, for reasons that we don’t really understand, these proteins end up breaking apart, and, sort of like a beaver’s dam, they begin to clog the pathways between our neurons.

BEN MAST: These proteins develop into these neuropathological changes.  

JESSE EUBANKS: So these protein abnormalities are what scientists and medical professionals call plaques and tangles, which Ben mentioned earlier. 

BEN MAST: Those changes, the plaques and tangles, are pretty closely tied to the cognitive symptoms and the functional changes that people experience. 

JESSE EUBANKS: So essentially, these malformed proteins — or plaques and tangles — they inhibit certain communications within your brain. 

RACHEL SZABO: Oh, so when a person has Alzheimer’s and their brain function continues to deteriorate, it’s because more and more of these plaques and tangles are interrupting more and more of their brain’s communication.

JESSE EUBANKS: Yes, exactly. It’s like more and more of these beaver’s dams are showing up all over the brain. The pathways are just getting blocked increasingly.

RACHEL SZABO: That’s crazy. 

JESSE EUBANKS: And all of this disruption with the communication in your brain — it can show up in a bunch of different ways. But one of the most common ways that it shows up is actually short-term memory recall.

RACHEL SZABO: Yeah okay, and that was evident when I spoke to someone who’s actually living with Alzheimer’s.

JEFF BORGHOFF: Can you ask me that question one more time? Sometimes I, I lose the question…

RACHEL SZABO: So this is Jeff Borghoff, and he has what’s known as early onset Alzheimer’s. So typically Alzheimer’s gets diagnosed around age 70 or later, but Jeff got diagnosed just after he turned 50. 

JESSE EUBANKS: Oh wow, that is young. 

RACHEL SZABO: Yeah, and getting an Alzheimer’s diagnosis — it’s a really long and involved process. So at first, very similar to Jane’s husband Hal, Jeff started to notice that he couldn’t quite remember things the same way.

JEFF BORGHOFF: I thought it was just one of those things that, y’know, ‘Okay, I’m 50 years old now. This is the way it goes.’

RACHEL SZABO: So Jeff worked in information technology and more and more he started not being able to recall information from his clients, so it was really starting to affect his work.

JEFF BORGHOFF: I was beginning to get a little stressed and anxious about it, and what was happening was that that stress and anxiety was beginning to manifest itself in some physical ways.

RACHEL SZABO: So not only is Jeff having trouble remembering, but now he’s super stressed that he’s having trouble remembering. And so what happens is his face develops this twitch. 

JEFF BORGHOFF: In almost like this uncontrollable fashion, it’s like, uh, underneath my, uh, my left eye. It was my, my cheek was like shuttering up and down. And it was re — it was visible. It was almost constant.

RACHEL SZABO: And along with the twitch, the other side of his face began to droop. So if you google what medical conditions can cause your face to droop, like it’s all serious stuff. So Jeff goes to the doctor, but he’s not going to get an Alzheimer’s diagnosis right away because diagnosing Alzheimer’s is not easy. In fact, the only way to have 100% certainty that someone has it is to do an autopsy on the brain after the person has passed away. 

JESSE EUBANKS: Oh my gosh. I had no idea.

RACHEL SZABO: Yeah, so to diagnose Alzheimer’s in real time — it takes several steps. And one of those steps is actually ruling out other possible diseases. So Jeff goes to the doctor, and the doctor rules out Bell’s palsy, he rules out a stroke, and eventually the doctor thinks maybe Jeff has epilepsy. So Jeff starts taking epilepsy medication, but of course the epilepsy medication isn’t making his symptoms go away because he doesn’t have epilepsy and he’s getting more and more confused. 

JESSE EUBANKS: Wait, so what you’re saying is that he has been misdiagnosed and he is taking medication for something that he does not even have.

JEFF BORGHOFF: The doctor had said at that point, ‘Well, this medication shouldn’t be doing that, so there’s something else going on.’  

RACHEL SZABO: So then Jeff gets an appointment with the head of neurology at a medical center.

JEFF BORGHOFF: She spent about two hours with us, and she said, ‘You know, Jeff, uh, I think you have Alzheimer’s disease.’

RACHEL SZABO: But that’s still not conclusive enough for an official diagnosis.

JEFF BORGHOFF: At that point I had a neuropsychological exam — which lasted about four hours I believe it was — and they asked me all sorts of questions, uh, memory tests. Um, they ask you to remember a series of words, phrases, uh, count backwards from, y’know, 100 by sevens, things of that nature. 

RACHEL SZABO: And in addition to that exam, Jeff also gets a spinal tap.

JEFF BORGHOFF: And they checked my spinal fluid for this, uh, what’s called the, uh, uh, tau protein, uh, the toxic tau protein. 

JESSE EUBANKS: Oh, so this is one of those proteins that causes the pathways in the brain to get blocked. 

RACHEL SZABO: That’s right. 

JEFF BORGHOFF: And they found levels of that in, in the, uh, spinal fluid. 

RACHEL SZABO: So with the results from the neuropsychological exam and the results from the spinal tap that found the tau protein, there was now enough information for a definitive diagnosis. The doctor confirmed that, yes, Jeff has Alzheimer’s.

JESSE EUBANKS: I can’t imagine how much a diagnosis like that would impact my life. Like having that disease — how has it impacted Jeff’s life?

RACHEL SZABO: Yeah, it’s impacted it a lot. Y’know, he was diagnosed four years ago, and life looks very different now.

JEFF BORGHOFF: When I was diagnosed, I had to retire, and so one of the things that made me feel purposeful in my life was no longer there — and it was no longer there overnight. 

RACHEL SZABO: And not only can Jeff no longer work, but he also can no longer tolerate some basic social interactions, y’know, things like going out to eat at a restaurant. 

JEFF BORGHOFF: When we go out to dinner, I have difficulty — uh, if it’s loud, if there’s a lot of, um, noise in the restaurant and, uh, commotion and loud music playing — what I will do is I I’ll go online and look at their menu and try to figure out what I want to eat. And then I’ll, and then I’ll go to the restaurant and I’ll already know what I want to eat because I know once I get there, my, my — uh, the stimulation — will put me in a situation where I might have difficulty ordering from the menu. 

RACHEL SZABO: But it’s not just affecting simple things like being able to go out to a restaurant. It’s impacting very profound things in his life that was not expecting — things like his involvement in church.

JEFF BORGHOFF: When I was diagnosed, I and my wife still tried to go to church. We, we, we were going to church every Sunday. We were, we were trying to remain active in the ministry that I was part of. 

RACHEL SZABO: But because a brain with Alzheimer’s is constantly changing, that means the way that the person responds to certain input or stimulation is also changing. And so soon going to church was just no longer an option for Jeff.

JEFF BORGHOFF: First of all, the music was generally too loud, so I would stay outside until the music stopped. It’s where I could, you know, sort of listen from afar. Then after that I would, I would come inside and sit and listen to the sermon. Um, however, the length of the sermon is problematic as well because, y’know, there’d be a certain length of time, uh, uh, and I would begin to zone out. I would lose my ability, um, my cognitive ability to be able to identify or continue to understand what, where, where the message was going.

JESSE EUBANKS: Gosh, this whole thing just reminds me so much of our episode that we did on where the gospel meets special needs, just people with special needs in the church. Like having particular special needs is so isolating. Having Alzheimer’s is incredibly isolating. So naturally you turn toward your church to help you not feel isolated, but then the nature of the way that the church operates, especially in corporate gatherings, y’know, it actually can compound that sense of isolation. It actually makes me think about something that Ben Mast shared. 

BEN MAST: People with Alzheimer’s disease are just like you and I, and they’re trying to live life. They’re trying to make sense of things. But they’re doing it through a brain that’s very ravaged and damaged.

JESSE EUBANKS: And Ben says that this is the biggest struggle that he sees with folks who have Alzheimer’s and also are Christians. This question of — ‘am I still a Christian if I can’t remember who Jesus is or where my faith lies?’

RACHEL SZABO: And, y’know, this was something I had never even considered before talking with Jeff. Y’know, I knew Alzheimer’s impacted people deeply, it affects their exterior world, but I never considered how Alzheimer’s might impact someone’s faith.

BEN MAST: If Alzheimer’s disease involves very significant memory problems — what if I forget about the most important parts of me? And for Christians, asking the question of ‘What if I forget about my faith and what if I forget about Jesus? If he’s the most important person and if my faith is the most important thing in my life and I forget about it, where does that leave me?’ If that’s my ultimate hope, that’s terrifying to think that I might forget and lose grip on the thing that I cling to so dearly.

JESSE EUBANKS: And really what’s at the heart of this question is this — does Alzheimer’s change who I am? Many people with Alzheimer’s — they seem to become completely different people. Their whole temperament changes. People who were once kind and gentle suddenly are quick to get angry. People who used to be really quiet become loud and rude. It’s heartbreaking to watch. And I think what we all wonder is — is our loved one still in there somewhere? And this stranger that now stands before me — can I entrust them to God?

RACHEL SZABO: Yeah, y’know, we haven’t really explored the perspective of the caregiver or the person that doesn’t have Alzheimer’s but is living with someone that does, and I think that’s a really important angle for us to look at. So what I’d like to do is go back to Jane Gumbiner’s story because those questions that you just asked are ones that she was asking too. So when we come back, we’re gonna look at the experience of caregivers. Stay with us.

COMMERCIAL

JESSE EUBANKS: Love thy Neighborhood podcast. Jesse Eubanks.

RACHEL SZABO: Rachel Szabo. Today — where the gospel meets dementia.

JESSE EUBANKS: So we’ve taken an in-depth look at Alzheimer’s disease. It is one of the most feared diseases among adults, and that’s because it actually really attacks our identity. Who are we if our brains betray us?

RACHEL SZABO: Yeah, and that’s something that those living with Alzheimer’s face, but it’s also something that those who live with them deal with as well. So let’s go back to the story of Jane Gumbiner. So remember when we left Jane, her husband Hal had been diagnosed with Alzheimer’s. And as we saw with Jeff, y’know, once you get a firm diagnosis, life completely changes. So Jane and Hal are still in Florida, they’re gonna be moving to Louisville in just a couple months, and now Jane is retired so that she can stay home and take full time care of Hal.

JESSE EUBANKS: Oh yeah, that’s common. 55% of caregivers for people living with dementia are actually their spouses. 

RACHEL SZABO: Yeah, and caregiving basically becomes equivalent to a full-time job, but this is a job that you don’t really get any training for. And so at the time Hal was still pretty mobile and able to do a lot of things and so one of his favorite things to do was go to Busch Gardens and so Jane took him there as many times as she could before they were gonna move to Louisville.

JANE GUMBINER: We just really enjoyed Busch Gardens, but they’ve got a lot of rollercoasters too. So while we were sitting there eating one day at lunch, I realized that my life was just exactly like that rollercoaster, especially emotionally. 

RACHEL SZABO: In fact, one of the hardest things for Jane was when Hal could no longer have conversations with her like they used to — in particular, conversations about faith.

JANE GUMBINER: He was my spiritual mentor in so many ways because we could talk about so much because he was so smart and knew so much about the Bible and I had, y’know, I had learned a lot from him. 

RACHEL SZABO: So Jane felt like she was navigating this ever-changing rollercoaster of a world all alone, and she knew she needed help — especially when it came to her faith.

JANE GUMBINER: I googled Christ and Alzheimer’s or something like that. 

RACHEL SZABO: So she was looking for practical help, but also help with those questions that you brought up, Jesse. Y’know, how do we cope when a loved one starts slipping away into dementia, and what if they can no longer remember who Jesus is? So anyway, she does this google search, and she comes across an article written by this guy named Ben Mast. 

JESSE EUBANKS: Ohh, the psychologist we’ve been hearing from.

RACHEL SZABO: Exactly, yeah. So Jane discovers that Ben actually wrote a whole book about this. So Jane orders the book, but she also sends Ben an email.

JANE GUMBINER: I wrote him, asked him if he knew of a good Alzheimer’s support group in Louisville because it looked like we might be moving there. The big shock to me was the fact that he actually answered me back. I was super excited that he did.

RACHEL SZABO: So Ben was able to put her in touch with a church here in Louisville that had a dementia support group. And so once Jane and Hal made the move to Louisville, Jane started attending this group.

JANE GUMBINER: Y’know, this was a huge learning curve for me. I knew nothing. What I did know about the disease was helpful, but there was so much more to learn, to be proactive and to find resources, information, activities. Um, what do I do now? You know, that kind of stuff. It was good. 

RACHEL SZABO: And not only was this church able to help with super practical things, but they were there to help with the hard questions too. So, Jesse, Ben Mast wrote a book and it’s called Second Forgetting: Remembering the Power of the Gospel during Alzheimer’s Disease. I’m curious — did Ben talk to you at all about that book?

JESSE EUBANKS: Yeah. So I actually asked him about the title of his book and what it meant, and here’s what he said. 

BEN MAST: So I think about the second forgetting as, uh, something that’s not specific to Alzheimer’s — in terms of people with Alzheimer’s disease, but also in my own life where something comes up and I cry out to the Lord asking him to deliver me from whatever it is that I’m facing and then that prayer is answered and I’m grateful just like God’s people are when they’re rescued. But then the next time comes when something hard happens and you think, ‘What in the world am I ever gonna do?’ And when I think about people with Alzheimer’s that I’ve known, families who are dealing with who are people of faith — they may have lived decades facing all sorts of hardship, all sorts of challenges that the Lord has brought them through and they’re grateful for it and they can tell you about it. But when there’s a challenge like Alzheimer’s — which for most older people is the most feared medical condition they can develop — I mean, it’s just absolutely overwhelming for people because they’re not just going to become forgetful. People feel like they’re gonna lose who they are. 

JESSE EUBANKS: And Ben’s not saying this to condemn people like, ‘Oh, your brain’s forgetting things and you’re making it even worse with your moral failure of forgetting.’ Like that’s not what Ben’s getting at. But what Ben’s saying is that even though we are a forgetful people, God is not a forgetful God — and that is good news. And it’s good news that Ben takes comfort in.

BEN MAST: I think that the Scriptures answer it for us in telling us basically that if, even if we were to forget the Lord, that he promises never to forget us and that the nature of God’s grace is that he reached to us before we reached to him and that he holds on to us even when we lose the abilities that, y’know, really led us to faith in the first place. 

JESSE EUBANKS: And that even as our loved ones change and decline, we can entrust them to God who made them and loves them and sees them as they truly are — without Alzheimer’s.

BEN MAST: In a biblical framework, we have to understand how God sees them and cares for them as well, that we all have inherent dignity and value, uh, as created beings, as people who are created in the image of God, and people have never been defined in the biblical sense in terms of what they could contribute and what they had to offer. God reaches to us first regardless of where we’re at, and he seems to have a real special care for people who are vulnerable. 

JESSE EUBANKS: And Ben says that, even though Alzheimer’s is daunting, engaging and loving those with it doesn’t have to be. In fact, he offers two very simple ways to love someone with Alzheimer’s. The first is engage their long-term memory.

BEN MAST: A couple of things that are particularly stronger in people with Alzheimer’s disease compared to their recent memory — is there a long-term story-based memory, autobiographical memory? So instead of asking people with Alzheimer’s about what they had for breakfast or what they’re doing later today — those are the hardest things for them to answer — engage them in their stories, give them time and space to just talk about things that they remember from the past that can be incredibly meaningful. 

JESSE EUBANKS: So the first way to help somebody that is struggling with Alzheimer’s is to engage their long-term memory. The second way to love them is to engage them in well-known songs or scriptures.

BEN MAST: Things that we have repeated many, many times over and over like a favorite Bible passage are stored in a different memory system that’s not as much affected by Alzheimer’s disease, and so we can see people who can’t answer simple questions about what they did this morning really seem to light up and become very engaged when a favorite hymn or a cherished song from 20, 30 years ago is played.

JESSE EUBANKS: So actually I tried out a version of what Ben is talking about here with my stepmother as she declined. There was one day she was really agitated having a hard time connecting with people, so we went for a drive in my car and I just literally looked up pop songs from the year that she graduated from high school and we just listened to those. And slowly her demeanor shifted. She became much more at peace and was much more engaging because it was totally stored in a different part of her brain. And actually, y’know, Jane isn’t the only person to write Ben. He says that he gets contacted frequently from people trying to make sense of Alzheimer’s, and he told me this story that I think is a great encouragement.

BEN MAST: So one woman wrote to me about her mother who was living in a nursing home with Alzheimer’s disease, very confused, very withdrawn. She went to visit her and they had very little interaction ‘cause her mother really couldn’t anymore, but she took her to a church service that a chaplain was running for people like her. And she watched her listen to the short sermon that the chaplain did and it looked like mom was asleep the whole time, not really engaged, so that felt like a fail. And then they started singing songs, and, uh, y’know, I don’t recall if it was ‘The Old Rugged Cross’ or ‘Amazing Grace,’ but those are two of the big ones. And, y’know, the daughter is basically crying, watching her and wishing she could engage somehow. And she said, ‘When I looked a little closer and started to really pay attention, I could see she was singing each of the words and her mouth was moving. And I thought she was totally out of it, but she was actually engaging in a song that was an act of remembrance, an act of faith, and was something that she clung to her whole life.’

JESSE EUBANKS: It just makes me think about how mysterious and complex being alive is, like the human soul is so mysterious and complex, the human body is so mysterious and complex. And even though these bodies fade, these minds fade, so much of ourselves remain in mystery to us. Y’know, God still knows us and God still knows the truth of who we are and God still sees into the mysteries of our very being and he holds all things together. The truth is this — as powerful and devastating as Alzheimer’s is, Christ has conquered that too. And Alzheimer’s cannot take from us our identity in Christ.

RACHEL SZABO: Yeah, and it’s actually those truths that helped keep Jane going, even as Hal declined more and more rapidly. Eventually Hal got to the point where he could no longer even go out with Jane.

JANE GUMBINER: Sometimes he couldn’t even get to the grocery with me, so I ended up hiring a sitter for one day a week so I could get out and do all the errands and things. They came and they just checked his blood pressure and his weight, you know, and he was hanging in there and he was doing fine. He just got to where, you know, he could just do less and less. I was helping him. I was dressing him, and I was showering him.

RACHEL SZABO: But through it all, Jane did her best to remember the Lord who never forgets. 

JANE GUMBINER: It’s depressing enough, but God always lifts you up in strength and puts you back on your feet and keeps you going. Even at night when I’m exhausted telling the Lord, ‘I can’t do this another day,’ the next morning I sure can.

RACHEL SZABO: Jane knew that God would take care of her and that he would be there for her, even in the darkest moments — like when she never got to say a proper goodbye to Hal. So at this point Hal could no longer really get around. His brain had declined to the point of losing motor skills. And one day he fell, and because he didn’t have the ability to catch himself, he broke his leg. 

JANE GUMBINER: When he fell, he broke his leg. He was in the hospital, but he never woke up from the surgery of getting his leg fixed. It was quick. It was quick. It wasn’t long and drawn out after that.

JESSE EUBANKS: Gosh, that sounds so hard. He literally went in for a routine procedure on his leg.

RACHEL SZABO: Yeah, and now Jane will never see him again. You know, just like when Hal got the diagnosis, life completely changed. Now for Jane, life is constantly changing again because she’s learning how to do life without Hal being there. And you know, since Hal got diagnosed with Alzheimer’s, he never really was able to be in church anymore like he used to be or like he wanted to be. Y’know, all that had to stop, but he did get to end his life in church. So as the family discussed funeral arrangements, Jane’s two daughters said, ‘Hey, we’ll take care of everything,’ and they arranged to have a service at the place where Hal had spent so much of his life before his diagnosis at his church in Florida. 

JANE GUMBINER: And we had a service for him in Florida, and it was wonderful. It was like heaven because so many people who had left the church for one reason or another had come back, and, oh my goodness, I have no idea how many people were there. It was a beautiful service. It was a beautiful time. I have beautiful memories. Oh, we put his ashes on that land where the church was, where his heart was all the time. It was just really, really good.

RACHEL SZABO: Hal passed away in July 2019. And for now, Jane’s taking time to grieve and she’s just taking things slow.

JANE GUMBINER: Uh, you know, coronavirus kind of in a lot of ways has been a blessing ‘cause it gives me an excuse to sit here and stare at the walls. Y’know, I’ve been pretty careful with my time because you don’t know when the tears are coming.   

RACHEL SZABO: And because of her and Hal’s story, she hopes that one day she can help others the way that others helped her.

JANE GUMBINER: I mean, there’s an amazing number of kind people here that have helped me and I would love to turn around and help other people. I don’t think my story is much different than most everybody else’s.

RACHEL SZABO: And in fact, this is the same attitude that Jeff Borghoff has as well. 

JEFF BORGHOFF: I would prefer not to have Alzheimer’s disease. However, God has, has given me an opportunity to make a huge difference in many people’s lives.

RACHEL SZABO: So Jeff now spends his days speaking and teaching through the Alzheimer’s Association, and he provides support and hope to those with similar stories.

JEFF BORGHOFF: Because this is a progressive disease, it will continue to become, uh, more difficult. However, y’know, I, I know that he’ll be beside me the entire way. Um, and so I, I just, I just continue to remind myself of that. ‘Christ is here, he’s with me, and he’s got my back,’ and that’s, that’s, that’s what I know. That’s what I believe with all of my heart and all of my fiber, and, and so that’s what’s really going to get me through this, this thing to the end.

JESSE EUBANKS: In the Old Testament, we see that repeatedly the Israelites forgot about God — but God never forgot about them.  Even after more than 500 years of Israel forgetting and forgetting, when they were exiled and their city lay in ruins and they thought for sure God had forgotten them, then God tells them this — ‘Can a woman forget her nursing child, that she should have no compassion on the son of her womb? Even these may forget, yet I will not forget you. Behold, I have engraved you on the palms of my hands.’

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JESSE EUBANKS: If you’re someone who has been impacted by Alzheimer’s and you’re looking for additional resources to help you, I also want to recommend a couple of our past episodes — Episode #19: Where the Gospel Meets Special Needs and Episode #26: Where the Gospel Meets End of Life. If you’d like more resources on this topic of Alzheimer’s, including Ben Mast’s book Second Forgetting, visit the resources section on our website. You can find this as well as other past episodes of this podcast at lovethyneighborhood.org/LTNpodcast.

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JESSE EUBANKS: Special thanks to our interviewees for this episode — Dr. Benjamin Mast, Jane Gumbiner, and Jeff Borghoff.

RACHEL SZABO: Our senior producer and host is Jesse Eubanks.

JESSE EUBANKS: Our co-host today is Rachel Szabo, who’s also our media director, producer, and the harbinger of death for all flies that come into the studio while we’re recording.

RACHEL SZABO: Our media assistant and audio engineer is Anna Tran. 

JESSE EUBANKS: Music for today’s episode comes from Blue Dot Sessions, with hymnal arrangements by Kaleb Brasee. Theme music and commercial music by Murphy DX.

RACHEL SZABO: Apply for your social justice internship supported by Christian community by visiting lovethyneighborhood.org. You can serve with us for a summer or for a year. You’ll grow in your faith and your life skills. 

JESSE EUBANKS: Which of these was a neighbor to the man in need? The one who showed mercy. Jesus tells us, ‘Go, and do likewise.’