Tight Knit

Ep. 7: The Unseen Hand

Episode Summary

A neurologist found himself entirely unprepared, emotionally and professionally, for his father’s Alzheimer’s Disease. But over time, Alzheimer’s revealed a side of his father that changed the son’s view of his dad--and of the brain--forever.

Episode Transcription

The Unseen Hand

Before we begin, a quick note. This series was created *before* the COVID-19 pandemic. You’ll hear an update on the caregivers and families you’re about to meet at the end of the episode.

Ashley Milne-Tyte: Alzheimer’s Disease often seems to be about loss…a loss of memories, skills, relationships. As a neurologist, Daniel Potts knew about that. At least, he thought he did. When his own father was diagnosed with Alzheimer’s, he had to rethink much of what he’d learned, both as a doctor and as his father’s son. 


TEASER: I had to set that aside and realize that this is the dad I have today and I have to love this dad, appreciate this dad and make opportunities for this dad to express himself today because that's who he is now. 


AM-T: What his father’s case taught him went far beyond his wildest imaginings…as a clinician, as a son...and as a person of faith.


AM-T: This is Tight Knit, a podcast about the many ways people are working to build stronger relationships and communities.

I’m your host, Ashley Milne-Tyte.

The Potts family is from Aliceville, Alabama. It’s a tiny town, population about 2500. Daniel grew up in the seventies and eighties with his parents, Lester and Ethelda Potts.


DANIEL POTTS: My mother was an English teacher and librarian in the town and my father was a saw miller. He grew up saw milling, but he had some other jobs there in the town. But for the most part he was a lumber man.


AM-T: Daniel says both parents worked hard to give him opportunities they’d never had, and they were thrilled when he became a doctor. It was a contrast to his father’s last full-time job, where he worked in extreme conditions--a hot, humid room where wood was being baked at 160 degrees. It was physically draining. After Lester retired from the lumber mill, in his mid-sixties, he was still active, especially at their church. And it was here the family first noticed he was behaving strangely. It began with a tree on the church grounds: a magnolia that Lester, a longtime parishioner, had always loved. But the tree was old, some limbs were falling off, and the church’s trustees voted to cut it down. 


DANIEL POTTS: And they did cut the tree down. And  this made dad very upset. Now this was a very, very even keel, um, sort of unflappable, very peaceful, still waters run deep kind of guy, Lester Potts. You know, he never got mad about much of anything, very easygoing. So it was uncharacteristic for him to get angry about this. But he did. And he went and told all the trustees that he was angry about this. Why did they do this? And it was sort of inappropriate. 


AM-T: But the family brushed it off, put it down to Lester being passionate about that tree. Not long after that, in the late 1990s, Daniel’s parents moved to Tuscaloosa, where Daniel and his wife already lived with their tiny daughter. They had another little girl a couple of years later. His retired father was still a workhorse and he got a job parking cars at the physicians’ office near Daniel’s hospital. But soon Daniel was approached by the colleague in charge of the lot - she was worried Lester might have dementia. She said he had been losing car keys, locking keys in cars, and getting lost in the parking lot.


DANIEL POTTS: The phone call that my dad made to me, either that day or the next day, I can't remember, which was to tell me that he was no longer going to be working there anymore and that he, he and mom were going to enjoy, enjoy their retirement and not do as much work. And I remember saying, Dad, I think that's a great idea. You know, you all deserve it. You've worked hard. And then after that, when he hung up, I just sort of fell apart, you know, and I later found out that he did too because I'm sure it was hard for him to admit this to me. He had never failed at any occupational tasks that I was aware of. I mean they had to hire three young guys to do his work at the saw mill, at the lumber company when he left down there. 


AM-T: Daniel says his father prided himself on his work and having to stop was devastating for him. Not long afterwards, he was diagnosed with Alzheimer’s. Now, Daniel was a brain specialist...he knew all about Alzheimer’s. And yet...


DANIEL: This was a ton of bricks, you know, and an awakening, sort of, for me. 


AM-T: He could see the road ahead, a road many of his patients had traveled. Still, even as his dad began developing more symptoms, Daniel resisted what was going on.


DANIEL: I had such high hopes. My mom and dad had moved over here. They had worked so hard, both of them, they now had grandchildren, they'd come up here, I'd gotten my career going, my wife's gotten hers going. And here we were gonna start out a new chapter in our lives. And my dad was always very healthy, very physical, very active. And I think I had this, this image of what was supposed to be happening over here. And I wasn't prepared to see it any other way, I think. 


AM-T: On a personal level, he was in denial. And he was going through what many physicians experience: the disconnect between their training and how they handle the failing health of someone close to them. Lynn Breuer has seen this often. She’s director of chronic disease management at Jewish Family Service of Metropolitan Detroit. 


LYNN BREUER: The more knowledgeable and competent and in control people normally feel, the harder it is to be on the opposite end of receiving that type of a diagnosis. 


AM-T: Lynn says that specialists like Daniel are used to having all the answers.


LYNN BREUER: And I think one of the hardest challenges for people in that situation is to avoid fast forwarding to the worst case scenario. When the average person might hear about a diagnosis, whether it's cancer, whether it's Alzheimer's Disease, might think, Oh...and they might think of an occasion that wasn't so severe. But for those professionals who are mired in living with it every day, their mind immediately goes to that end stage, worst case scenario. And it really causes feelings of powerlessness, helplessness.


AM-T: Daniel says that as he struggled, his mother sprang into action, assuming that he could help her understand the disease.


DANIEL: She would ask me, what do I do when this happens? How do I handle him when this happens? How do I deflect or redirect this behavior and stuff like that. And, and I didn't really know what to tell her. And, and, uh, I mean, I knew the pathology of Alzheimer's Disease. I knew the treatments that we had available for it at the time. And I knew the clinical progression and all of that stuff. But in terms of the day to day caregiving, I, I didn't know it because we didn't learn that in med school and residency…it’s not something you learn unless you’re of the throes of it. 


AM-T: Even with his years of education and clinical practice he felt he couldn’t help his father or mother with what they really needed.  


DANIEL: Not only did I feel like a failure and that I had let my dad down because I didn't know how to take care of him and I didn't know how to get him diagnosed, I didn't see the early signs...but I was also letting my mother down because here I am a neurologist and she's asking me how to do this and I don't know. And so  it plunged me into a, a sort of a shame hole, I'll call it, because I was ashamed of myself. I didn't know how to help.


AM-T: It wasn’t just that he couldn’t help out the way he felt he should. His dad’s illness was having another effect. 


DANIEL: It was humbling because the disease in effect was coming in between me and my parents. Um, I'm an only child. I was always very close to my parents. They suffered a lot to give me the best of everything. And here I was floundering when given the opportunity to do the same for them, to pay back, to pay them back, to pay it forward, so to speak, as a son that I thought my duty was and I wanted to do it. But Alzheimer's had interposed itself between my desire to do that and my good intentions and the actual, me being effective at doing that. So I was angry, I resented it extremely. But yet I was no match, even with all my neurologic knowledge, I was no match for the beast.


AM-T: As an example--Daniel says he tried to head off his father’s Alzheimer’s by intercepting Lester whenever he began to act strangely in public. He says his father was known for encouraging other people. But now he’d sometimes walk up to someone he didn’t even know and say, ‘I’m proud of you.’ 


DANIEL: Or he would try to greet the pastor as the pastor was walking out of the church at the end of the service down the aisle. And he would get up and stop and greet the pastor and tell him how much he enjoyed the sermon, et cetera. Um, they handled it well, but I don't think I handled it and we handled as well as we could have because it was embarrassing. And we might correct Dad, you know, ‘come over here, come over here. We don't know him.’ Or something like that, maybe I would say. If I had to do it over again, I'd let him do that. And I would explain to people perhaps afterwards, um, or maybe hand them a card, you know, a business card, that says, ‘my dad has Alzheimer's’ or something, or figure out a way to let him express himself because that would've been more validating to him. 


AM-T: Daniel says he can now pass that kind of advice on to other Alzheimer’s families. But when his dad first started greeting strangers, he was focused on his own discomfort with his father’s behavior - not on what his dad might actually need. He’s far from alone. Lynn Breuer of Jewish Family Service of Metro Detroit says family members often get frustrated when, say, an older person talks about a dead parent as if they’re still alive, or says they need to get to class when they haven’t been a student in 60 years.


LYNN BREUER: The key, especially in that dementia context, is to be able to meet that older adult where they're at. I think we lovingly all too often make the mistake of trying to reorient people to the present and that's a battle we're never going to win. 


AM-T: It’s kinder, she says, to engage with them where they are even if it may feel odd at first. But in the early 2000s, Daniel Potts hadn’t learned these lessons yet. By that time his father was becoming more confused and having trouble getting his words out. His mom was home all day and night with his dad. Daniel knew of a local adult daycare for people with memory issues called Caring Days, but he says his mother resisted. She still wanted to do everything for Lester herself. 


DANIEL: But it sort of came to a head when, um, he began to get rough with her at night, push her down on the floor when he was trying to go do something and that sort of thing when she would try to get him back in bed and he would resist her and become somewhat belligerent with her and, and injured her. And so, we had to do something and she agreed to do it. And so dad was all about helping people and doing repairs for people and that sort of thing. So we told dad about Caring Days and that they needed someone to help do some repairs down at Caring Days, would you go down and do that? Sure. So he went down, you know, thinking he was helping those folks out. But that's how we got him to go down there.


AM-T: Getting Lester to go to Caring Days was important for Daniel and his mother. But they had no idea how much of a breakthrough it would be for all of them. Because, up to his point, the family’s story may have been what you were expecting: The brain specialist son who gradually learns to accept his own father’s neurological condition. His mother, who’s been determined to look after her husband day and night, finally accepts help from someone else. But that isn’t the WHOLE story of the Potts family. Because, when Lester Potts got to Caring Days, they did NOT have any odd jobs for him. What they did have was an art therapy program. Lester Potts, who had spent his entire working life in sawmills and lumber yards, had never shown any interest in or aptitude for art. But over a couple of years at Caring Days, Lester made, and signed, more than 100 watercolor paintings.

(ambi from movie sneak under this next sentence)

In this scene from a short documentary called Do You Know Me Now? Daniel and his mother Ethelda are looking at one of his pieces...


DANIEL POTTS: Now Mother we got Dad’s original art right here.


DANIEL: And what is that?

ETHELDA: Well honey, that’s the first one he brought home. The first one is that hummingbird. And he brought it in and showed it to me and I said oh, that’s so pretty honey, who did that for you? And he said, I did it myself. And see, he wrote his name right there. That’s his - his little printing.

DANIEL: And he was very proud of that..

ETHELDA: Oh, he was so proud of it.

DANIEL: I guess because up to that time we had no idea he could do anything like this…

ETHELDA: No! No...


AM-T: If you can, go to lesterslegacy dot com and look at his paintings. They’re vivid, fluid and colorful. There’s a pair of lifelike ducks in a pond, a close up of a butterfly, bright tulips against a gray sky. There are churches, and sunsets, and hills. A bright green pasture with a stone wall. And Daniel says that some were memories from Lester’s childhood.


DANIEL: An image of his father including a high-top shoe and a cross-cut saw and a hat on a cross that came out toward the end of his painting life...


AM-T: Daniel says when his dad first started painting, he’d paint from pictures his art teacher brought in. But that changed. Later, every scene he painted seemed to come from inside his head. One of these paintings is of a brown woodframe house, set back in some evergreen trees…the windows painted yellow. It’s called, “Lights Left On.” 


DANIEL: I was I guess trained to some extent, but also just conditioned at that time to look at diminishment and to look at loss and to look at disease, as something that needed to be fixed or treated or cured, and diseases like Alzheimer's of course, can't be fixed, treated or cured. So, but I didn't have the vision at that time to, to see remaining gifts and talents and remaining expressions of personhood until Dad showed me his own personhood in the throes of the disease. And I think he was able to do that partially because the people at Caring Days knew how to draw it out of him.


AM-T: He says the daycare center started with what they had - the older man sitting before them now.


DANIEL: I look back on it and realize that this incredibly validating place that looked at the Lester they saw every day and loved that man, and did not grieve the Lester that was not the same. They just knew the one they met every day. So they made opportunities for him to express himself and be Lester. Whereas in our family, we were not really doing that.


AM-T: He says he and his mom were spending too much time re-directing his dad - the confused, sometimes inappropriate man who was so unlike the old Lester Potts. But seeing what his father was capable of at Caring Days, Daniel started to re-think everything.


DANIEL: It was not fair for me to hold dad accountable to be the person who he was for me 20 years prior because he can't do that anymore. I had to learn how to set aside my, the dad that I was drawing upon in my ego, which was partially the dad I needed him to be. I had to set that aside and realize that this is the dad I have today and I have to love this dad, appreciate this dad and make opportunities for this dad to express himself today because that's, that's who he is now. 


AM-T: He and his mom began to see what Daniel calls expressions of his personhood on canvas, when Daniel and his mother had been looking at his father as someone who was losing his personhood. 


DANIEL: And Dad said, no, I'm still Lester. Here's my art. You know, here's my story. And so this was the beginning of what has been just a profound educational experience for me. And now we, of course, this is the main thrust of my advocacy work, to realize that the person with Alzheimer's is still a person. The person with dementia is still a person. Nothing can take that away. 


AM-T: This epiphany led Daniel to start a non-profit organization called Cognitive Dynamics. It’s dedicated to bringing the arts to people with dementia and other cognitive disorders. You may also remember that church was central to the Potts’ family’s life. And Daniel says he’s carried that alongside his scientific and personal understanding of his father. 


DANIEL: And I draw on my faith background and to say that personhood is imparted, it's God given, it's inviolate, there's nothing we can do to diminish it and there's nothing that disease can do to diminish it, but we have to be able to see it and bring it out. So my, my observation powers changed. I put on new glasses. I now looked at people including patients in my practice who had illnesses that are seen as diminishing, I looked at them differently because of dad and because of his art, I now see a whole human being despite the fact that they're struggling with this disease.


AM-T: He says that’s not the only gift his father gave him. He was deeply inspired by Lester’s creativity. 


DANIEL: When I saw that, I could see the light in the darkness and I began to write, I began to write poetry and sort of journals and things and I’d never really done that before. And the poetry buoyed me on and it allowed me to tap into my faith in a way I never had. I was always religious and I was, we were at the church every time the door opened, et cetera, and I consider myself having a good faith walk. But when the going got tough, I didn't tap in like I should have, but dad's art and the writing and the poetry helped me to do that. And I've continued to do that to this day actually.


AM-T: Daniel says before Lester went to Caring Days his condition was going steadily downhill. Once there, it stabilized for about two years - years in which his father worked every day on his art. He says at a time when Lester couldn’t hammer a nail anymore, his dad came home each day proud of his work. Eventually, though, Daniel and his mom moved Lester into assisted living, then a dementia unit, then a nursing home, and ultimately, to a hospice. But Daniel says even then, even when he was sick with pneumonia, and not speaking...his personality found a way to shine through. This time, the catalyst was something he had loved since his childhood: church music. 


DANIEL: We called up people that had known dad over the years, people that were singers. We were, we were all singers. Dad wasn't, we didn't think, a singer. He appreciated it, but he couldn't stay on pitch, but he loved music and singing. So we got all our buddies around and we sang around dad's bedside and we, we reminisced about dad and we prayed over dad and we laughed and that sort of thing. And Dad seemed to enjoy it, but he was singing along with us on those old religious songs of his early days, in fact, carrying a tune. In fact, he sang on key. First time I've ever [seen my dad] heard my dad sing on key was a few days before he died. It was pretty amazing. 


AM-T: One of the songs everyone sang around Lester’s bedside was an old hymn that Daniel says was one of his father’s favorites. It’s called The Unseen Hand. It begins ‘There is an unseen hand to me that leads through ways I cannot see…’


[music up--phrase of The Unseen Hand]


AM-T: Daniel--as a clinician, as his father’s son, and as a person of faith--still can’t explain all of the ways that Alzheimer’s affected Lester. And in many ways, he says, this has made him a better doctor and advocate for people with cognitive illnesses. Lester showed him that mystery... and how to live with it, AND accept that there are some things that medical science, or even a lifelong relationship, can’t tell us about the people we love. 


AM-T: Again, to see Lester Potts’ paintings, go to lesterslegacy dot com.


Since coronaviruscases have picked up in Alabama, Daniel and his family have been fine, including his mother. 

They’re being careful, mostly keeping their distance from his mom, though they see her outside on their porch for the occasional dinner. 

He tells me Caring Days has been closed since the spring, but they’re hoping to open up again later this year. 

On our next episode, we’ll see how volunteers can step in for families without a designated caregiver.


SASHA YERKOVICH: There is a large generation of people that are moving into old age without what you and I think of as traditional family caregivers. There's an increased divorce rate. There's an LGBT community that may not have children. 


AM-T: Tight Knit is a project of the Ralph C. Wilson Jr. Foundation.


Our story editor is Diantha Parker. This series is sound designed and mixed by Thrilla Park Audio. And our executive producer is Mikel Ellcessor for Limina House. 

We had production assistance from Mary Sier, Sara Ali and the team at Lafayette American.

The caregivers we’re meeting are just some of the many people out there who are looking after someone. 

If what you’ve heard reminds you of someone you know, please share this with them. 

You can find this story and more at tightknit dot org. 

You can also join the conversation on social media @RCWJRF. 

I’m Ashley Milne-Tyte. And thanks for listening.