Daniel Potts and Ellen Potts

00:00 Don't start. No, my name is Ellenwood wood pots and I am 44 years old. It's December 3rd 2010 and we are at First Presbyterian Church in Tuscaloosa, Alabama. I am interviewing my husband. Dr. Daniel Potts about his father's story and and life experiences through his illness with dementia.

00:33 And I Daniel Potts on Ellen's husband and I am going to be telling the story of Lester Potts who is my father who has Alzheimer's disease and I am a neurologist here in Tuscaloosa.

00:52 And I'm 44 years old about to be 45.

00:57 Talk to me about your dad tell me about his personality and and where he was from and his growing up experiences.

01:09 Lester was

01:11 Born in Camden, Mississippi in November of 1928

01:19 Lester's family the Potts family in the Blake's in the Brandon said come to Mississippi and Alabama area from South Carolina in the early eighteen hundreds.

01:31 And they were farmers and saw Millers.

01:35 And they settled in oktibbeha County, Mississippi.

01:40 NFL plays call Carolina.

01:42 And I live there until about 1895 or so and if that point

01:49 Dad's great-grandfather died and widowed his great-grandmother.

01:56 The two little boys and the great-grandmother had some relatives in Pickens County, Alabama. So she moved the family to Pickens County, Alabama that time

02:13 The story of this family is interesting because we don't know how lot about it. But we do know that the family were sawmilling folks and we have old pictures. We think from the 1980s that show The Sawmill so we know that sawmilling was in the blood.

02:32 Actually, the woman that moved to Pickens County was my my father's grandmother.

02:39 And her son was

02:42 Dad's dad Lester senior. I think I misspoke that but so sawmilling was in the blood and

02:51 Dad's father Lester senior grew up in Pickens County, Alabama

02:58 He was a farmer and

03:02 Got turned away from sawmilling in his early life to form but in the Great Depression things got rough, and he was not able to make a living for the family forming.

03:14 So he moved back to what he knew from his family Roots, which was sawmilling and he traded some land for a sawmill.

03:23 And

03:25 Dad remembers

03:28 The day that the Sawmill arrived

03:32 He was about two years old and late in life. He wrote A Creative expressive story about that and we still have that story has been are glad to have it. But if I quite an impression all day to see the aux cord care in The Sawmill and have the men unload it and so the Sawmill came back into the picture Big Daddy dad's dad. That's what we called him. Try to land for the middle in the middle actually put shoes on the feet and food on the table during the Great Depression for their family.

04:06 Today's earliest memories. We think we're tied up around that Sawmill and the family and

04:17 We we are awfully proud to to actually have several pictures from that time that that have told us a little bit of the story.

04:29 Let me tell you a little bit more about the Sawmill because if it's important lighter dad worked awfully hard as a young man in that place and he learned about hard work. He learned about ethics. He learned about relationships. He learned about the value of hard work of pulling part of another man's weight and all of your own.

04:58 And that shaped who he was and these relationships that were forged in that Sawmill between dad and these men who were of different ethnic backgrounds and different socio-economic backgrounds continue to be very very important in Dad's life and he remained friends with some of these fellows for almost his entire life and

05:24 Lester love to work.

05:27 And that's that's one of the things that was a characteristic of his.

05:35 Talk to me about

05:39 Your father's diagnosis with Alzheimer's disease and your experiences as both the Sun and as a neurologist in that process.

05:55 Lester continue to be

06:00 An upstanding citizen either move to Aliceville Alabama after he married my mother with Elder Oaks from Columbus, Mississippi and dad was a community pillar. He was the church later. He was at a well-known citizen of the community of Alice woman was a city councilman after I

06:21 As you know, I got out of Neurology residency. We move to Tuscaloosa and dad and mom moved over here to be close to us.

06:32 Having retired himself from the lumber business their announcement.

06:38 Right before he moved over he began to exhibit.

06:43 Some behavioral changes that looking back on it. We realize were there early signs of Alzheimer's it's interesting that some of those changes involved a tree there was a magnolia tree in the churchyard analysis. Will First United Methodist Church that day I'd love that was a chairman of the administrative board there for 16 years and mom was mom has a choir director. So he loved the church spent much time there. This old tree was kind of bad shape and was beginning to lose limbs one of the new pastors that that came there is his wife tripped over a lemon and so the trustees of the church decided that they need to do something about the tree and they decided they had to cut it down.

07:24 What is my dad off Lemay? I know you have to realize that Lester was a very very even-keeled human being he was not somebody that was easily offended and certainly didn't raise her hand to Aurora's voice anyone but it made him mad. So he went and hunted up the trustees and told them all off for cutting the tree down.

07:44 Well mother tell me about this and we realized this was not characteristic of Lester. But looking back on it. That was probably one of the first signs.

07:53 Dad and mom moved over to Tuscaloosa. He had just retired certainly wasn't going to sit down and not do anything. So he got a job over here parking cars at Physician's office building here where we began to lose cars begin to lose keys. He would get lost in the parking deck for 45 minutes an hour. His co-workers would would be upset about this. I didn't know a lot of this at the time he had a couple fender-benders coming home from work Mama tell me about some of this she didn't know a lot of it either and we sort of I think I don't think she blew it off, but I sold it blew it off and was in denial.

08:32 Well

08:34 I was sitting Madeline my office one day and then an attorney who was in charge of of of the of the parking garage where where Dad was parking came over and said I possibly speak with you about your dad. Are you aware that he's having a real hard time at work? I said know, what are you talkin about?

08:53 She said well, I'm breaking a lot of employment laws right now to just to talk to you about this, but she said there's there's a more important laws. He said my dad had Alzheimer's disease.

09:06 And let me tell you what's going on with your dad. So she told me about these instances where Dad was losing things and she said we're going to have to let your dad go.

09:16 I sure will. Thank you for coming to talk to me.

09:19 You've done me one of the greatest favors you ever could you open my eyes to the fact that I think my dad has dementia or Alzheimer's

09:28 Well, I got a call that afternoon from dad who said son. I'm not going to be working at that place anymore. It just didn't work out.

09:36 And I want to spend time with your mom here in retirement. I'll sit there. That's okay.

09:43 I think you need to do that. Don't worry about that.

09:46 Anna he hung up and I cried and he probably cry too cuz that's the first time they had ever failed at anything that I knew about.

09:56 And that was when the beginning of this awful disease course started.

10:01 After that, we got him diagnosed my partner at Alabama Neurology & Sleep medicine at the diagnosis and we got him on some medication.

10:11 And

10:14 I probably the hardest up to that point the hardest thing I had ever been through and I'm sure it was for him to

10:23 Your dad's progress or or descent into Alzheimer's disease was rather rapid. I remember talking to dr. Geyer about him and one year. He recognized 17 of 18 road signs and his driving evaluation of you know to check and see if he was safe to drive and the next year. He recognized one of 18 road signs. How did this complicate the any kind of preparation or any kind of mental or emotional preparation or or financial preparation for what was to come?

11:13 He descended. So rapidly Ellen into the into the disease that we were sort of left.

11:24 Nope, grasping for for any information in any planning guidance that we could

11:33 I I thought I knew a little bit about Alzheimer's disease just from going through neurology residency, but I can't seem to find out that I really did and what I didn't understand about it was the day today caregiving aspects of the illness. It devastates families. It devastates caregivers lives not to mention what it does to the poor patient.

11:54 But because that's our rapidly descended we we we really didn't have up have our planning carried out. So we began to to look around for advice what I didn't know about what we didn't know about what we're a lot of the legal issues. A lot of the financial issues that the long-term planning issues and so we went through that dad became depressed. He became aware. I think he was aware that he was losing his ability to do things. This was a man who never called a repairman. This was a man who could do it all himself. He began to have trouble putting it all together. And this was very depressing for him. So his mood changed he became a pathetic. He he he became somewhat agitated early on Lost His language ability.

12:43 So there were so many issues that my mother had to deal with in terms of data daycare, but also worrying about what comes next worried about. How are we going to take care of this man as he descends into this song into this Abyss?

13:00 I think one of the most difficult things about dealing with a chronic illness and and especially with dementia and Alzheimer's disease because there are so many as we have found out with both of our families. There are so many variations on the theme that there's really no roadmap for the family that this is what you can expect and it's going to take this long and there's there's no there's no plan. There's no roadmap tell me about your father's depression and the the what what turned that around

13:43 In the field of Neurology, we often say that if the patient comes to the appointment because they have recognize themselves as having memory loss. That's a good sign.

13:56 But if the family brings patient in and they are unaware that they have memory loss. That's a bad sign.

14:03 That is partially true. And I totally I do believe that folks that have Alzheimer's disease know that something is going on breast as my dad would be the only damn to say prayers with Mom at night. Like they always did and they would pray out loud and mama look up and he would be crying and she said less what is wrong and he would shake his head and say I'm so messed up and I don't know why I'm so messed up. He knew something was going on it depreston.

14:34 So I think medication helps a little bit to turn that around, but the thing that really helped to turn that around was dad's enrollment at caring days, which is the longest running dementia day care center in Alabama. It was started as an Outreach of First Presbyterian Church here in Tuscaloosa and some Community leaders who realize that we needed an outpatient dementia care.

14:59 There was an opening there. I've been on the board to carry days for some time, but really didn't fully understand what they could offer until melt mom and dad went down so dad was in Rowlett caring days and almost the very beginning Ellen as you know,

15:14 Dad

15:16 Became a different person the rapid descent into this disease stopped dad stabilized for about a year-and-a-half. We think because of the care that he got to Karen guys care such as validating his Humanity in the very place. He was right now the folks at caring days didn't look at that and see laws. They didn't look at that and see broken this they didn't look at Dad and see someone who used to be unimportant wonderful human being they looked at somebody who still was

15:57 Just the fact that he lost his language in the fact that he was losing his his his abilities to do things with his hands and that sort of thing didn't matter to them because he was still Lester. So what I did was I tested everything off they died. I pulled the curtains back on those on those those Faz guys. I didn't talk anymore as we all know when we look at an Alzheimer's patient. They often have a Blank Stare. They pulled the curtains back on that and saw that left her head gifts and talents some of which had not even been found and they gave him the opportunity to express himself and I loved him for who he was.

16:37 One of the things that I love about carrying days when when people bring in their family members Vickie Kerr, the executive director will greet them and they'll look at Vicki and they'll say oh we wish you had known daddy the way he was or we wish you'd known Mama the way she was and Vicky always says, I'm so glad I did because I loved him or I love her just the way she is now and I think that that is the

17:10 The huge shift in mindset that needs to occur end in dementia care across the board with families with caregivers professional caregivers, like caregivers. One of the things that caring days does is that use various kinds of creative arts therapies your dad started going to caring days at the point at which this incredibly capable man could no longer put the lights on the Christmas tree or hammer and nail, but tell about the activities that caring days and how that gave him back his his pride and his feeling that he was still capable.

17:58 When an Alzheimer's patient descends into the disease, they lose cognition. Yes, but their Emotional Self remains and they become somewhat locked into that self. They're there with their emotions and their early memories and I can't get them out and they can express and they can't tell their story. We all have to tell our stories and we have to be heard so dad was exposed to Art. He was exposed to music. He was exposed to dance pet therapy storytelling reminiscence while he was at caring days and these really opened him up. I wouldn't think Dad could saying dad dad used to leave the singing at Pine Grove Methodist Church. As far as we know he couldn't sing mother was the choir director now so you don't need to be singing with and I could say, you know, he could carry it to invite one of the last things I ever did on this Earth was to sync.

18:54 For the music got to know what really amazes those the Arduino Dad could draw never seen him draw anything. What is an appreciator really of a fine or that we knew I but he was exposed to Art a fella named George Parker who was a retired artist came down there in and volunteered his time to do some art therapy with with the client will all Lester was his best was his best clients dad begin to immerse himself into watercolor art and over the course of about four or five years. They had painted over a hundred original watercolors down there with George's help.

19:34 And this is changed our lives and changed as life. Also, the art gave him the mode of expression that he didn't have art art. It initially was taught to Dad sort of by by George but they getting guidance early on but then he just let Dad go in the other clients go and so over the course of these years. We saw dads are to change initially was kind of primitive. It got really good and then sort of technically advanced in the middle stages and then it typed it on off and became very very powerful and pointed at the end when he was when he was left with painting.

20:07 Images from his childhood very very powerful image of some of them abstract L and some of them abstract representations of his home of his father.

20:18 At a time when he couldn't say just about anything. The thing that amazes me is that he couldn't hammer a nail though. He couldn't untangle wire. He could paint the tail pictures with that same hand.

20:36 So the art therapy change that.

20:41 One of the things that has always struck me about your dad. He reminds me of my grandfather so much because he was a very utilitarian Soul if you went fishing you did it to put food on the table. He he was all about work. And if you drew something you drew it to scale it out to build it your your father was probably the last person that I would have picked to become an artist. But but the the the disease process his particular variant of Alzheimer's disease really created a situation where his creativity could come out tell us about that.

21:28 You know the phenomenon of Alzheimer's art in art and dementia is not a new one, but it was not something I was very familiar with until it happened to Dad there studies that show that that folks with Alzheimer's disease, but especially folks with frontotemporal dementia, which is another kind of dementia often become artists and those that are artists often there. There are changes in characteristic ways. I asked you lose language ability. And as you lose your identity that is tied up in language.

21:59 It off and dissing Hibbetts the creative side. So we're talkin 9 little left-sided frontal brain capabilities with your language related. They died away in Alzheimer's patients in and frontotemporal patients and that releases the right hemisphere of the brain to be creative. It is thought so if you look at Dad's MRIs for instance USA atrophy or shrinkage of the brain in the left frontotemporal area, which is the language area, but you don't see any atrophy in the right parietal region, which is where the images came from.

22:37 So so art exposure to the expressive Arts gives these folks an outlet which bypasses this language related to function you say and gives him the opportunity to be expressive and creative and to get the ditch you communicate with the world again.

22:59 And not you don't have to use language.

23:02 So we saw Dad go from a depressed broken human being.

23:08 Fully aware. I think we're at least partially aware of his Brokenness and his deficits to someone who smiled was proud of his creativity could have relationships that were meaningful with other people again, and this was through the expressive arts and through the caregiving that validated him where he was right now. And that is the lesson the main lesson that I think you and I agree that we have taken from this experience.

23:45 The particular very end of Alzheimer's disease that the frontotemporal variant that your father had in addition to standard Alzheimer's disease to also caused some other problems with behavior and this this even Keel man who was easy going very very calm gentle guy, but he was he was a big guy who was really strong and proud of the fact that he was strong and the the as he lost his his sense of self and judgment his he also develop some behavioral problems. Talk to me about those.

24:33 Dad became somewhat socially inappropriate during the course of this disease. In other words. He was somebody he would go up and hug strangers and tell him he was proud of him. He would in in sitting in church when the ministers were walking out at the end of the service dad dad's liable to hop up and shake hands and hug people as they're going out, you know, so that created a little bit of a problem people didn't know how to interact with him too much, you know, because of that Dad would hug you and I mean, he would hug you and then you're liable to leave that you know with a broken rib. I mean, it's a he would shake your hand and he did he had a big old Mississippi State class ring that have huge hands Etta Mississippi State class ring on and he's liable to imprint the Mississippi State Insignia into your finger and you might have that was several months afterwards. But anyway, he so he he didn't know how he was he was disinhibited. The other thing is

25:33 Had these behaviors even if he would die princes, he would get little pieces of paper and tie them in knots and put them in his pocket stuff his pockets full of those pieces of paper. He he also could not inhibit his eating desire. Dad. Love to eat always did but I after he got to dementia know how to stop eating. So for instance we took in one time to is your member of Maria's I believe is Maria's the birthday party and she had about 60 little friends there and they all have cake while I had dad cleaning up the cake to do to help me clean it up with Dad was eating all of the leftovers of the cake and then throwing up lights away. So he probably had you know, 15 and a half pieces of cake that day that gained about fifty pounds after the diagnosis. So these behaviors were just going to deal with lighter is a disease progressed and became belligerent and agitated. And in fact, we had as you know, Dad in seven different facilities because he became so hard to handle we have inch.

26:33 I had to commit him to the probate court system to the Harper Center, which is a behavioral geriatric psych hospital here at Bryce hospital. That's a wonderful place and they got in calm for the last several months of his life, but it becomes could becomes very very hard as you know to deal with this agitation.

26:54 Talk to me about his hospice experience and the the

27:03 Talk to me about the fort before the hospice experience even tell me about your fears because of his behavior and what brought about the the committal and then and then the the calm after that and and his admission to hospice.

27:26 It got rough as you know, well and dad was still going to caring days but at night dad would get disoriented and violent. He would get up push mother to the floor go on the way to the bathroom rearrange the furniture Wonder out in the yard break the lamps cook on the stove, you know, and it got really really rough in mom took it as long as she possibly could so it is eventually we had to intervene and dad had to be certainly institutionalize. He was in several locked dementia units here in Tuscaloosa. He got violent and wandered in those eventually had to go to nursing homes and eventually as you know became so violent that we had to commit in the committal procedure was very very traumatic on all of us because here was a man who you know, this was so uncharacteristic for Lester to be this way and we all knew

28:24 That it was disease the disease, but it was still so hard but we went through we certainly had we had friends in the legal profession that helped us through this and I will I will never forget that one of dad's best friends. Judge Robert Hugh Kirksey from Aliceville was an attorney and his son-in-law was going to be the judge that was taking this case and Robert Hugh Kirksey told John pelusi the judge he was he was going to be doing this case. Here's one we have to get right because this human being is worth it.

29:00 And I'll never forget that but the committal proceedings went as well as it could have and we got that in the Harper Center.

29:08 During that month These Fine people at the Harper Center calm down and they used on this route many techniques to do that and Richard Powers who is the head of the Alabama Mental Health Association in a friend of ours help us get him in there. He subsequently went to the VA nursing home dementia nursing home here in Tuscaloosa, which is again a wonderful facility and Dad spent probably the last few weeks of his life there in peace one funny story. I have to say it to tell you mom was over there. If you go over there and visit him at least twice a day help feeding and asking questions. Try to try to reconnect trying to reconnect with him.

29:48 For 5 minutes, you know if possible.

29:52 And she would say things like the last year. When did we get married? What's my name and all those things a debt would sign anything?

30:01 One time she said Lester. How old are you? And he woke up out of his Slumber and system not as old as you.

30:09 Which was not true. He was older than she but

30:13 South peace but withdrawn into himself finally dad got aspiration pneumonia as typically happens when the hospital we were fortunate enough to be able to transition into Hospice of West Alabama and he spent the last days of his life in Hospice of West Alabama with folks holding hands and sing it around his bed with his art in the room on easel so that he could see it with birds outside eating guy and inviting themselves and in the in the water there and with reminiscence about what wonderful life he had so we wouldn't take anything for that experience.

30:49 And I want you to share some of that and I'm going to share some about it as well.

30:55 One of the things that amaze me when your father was admitted to hospice. He had not really spoken in about three or four months and as we were as we had him in hospice there we would sing around his bedside and surprisingly enough he could see I don't think we had some with him in the last several months. But if you sang old hymns that he knew from growing up he would he would join in and he would sing he would sing Old Rugged Cross and he would sing all of those one particularly funny story of it was actually less than 24 hours before he passed away you and your mom were out meeting with a funeral home director because we knew that the end was near and I was he really couldn't eat

31:55 Emil but he we would give him little things that you ice cream or something that he would enjoy the taste of and I was trying to feed him ice cream at the same time. I was trying to sing How Great Thou Art and I got to one.

32:12 Yeah, 1 transition of a phrase and suddenly I just lost the words and and I couldn't I couldn't sing anymore and my aunt and my father-in-law who was it who is completely had this Blank Stare? I looked at him. I said hi Papa. I forgot the words to How Great Thou Art and he went and had this horse just horrified. Look on his face to think that he was leaving his only son with this woman that couldn't remember the words to How Great Thou Art leaving and probably more important leaving his granddaughters to this woman. But we we had a wonderful experience in hospice and tell about tell about his his passing.

33:04 From the moment. We rolled in the hospice of West Alabama. We were comforted. It's a beautiful place. It feels like home. We went into a room that had a picture of an angel on the wall went over and looked at the angel in the angel's name was Lucy. The significance of that is that Lucy was dad's pet name for mother for 50 years. So Lucy was watching over us and in the room when we walked in as I said, we put pictures of Dad's family in the room we painted or we put pictures of his paintings that he had done in the last things he saw I guess on Earth were those panties and his mom and dad and and all of us,

33:42 As we sang around his his bed the last day he was alive and he began to take a turn for the worse and we realized he was having worst time of this pneumonia and he spiked the temperature and we realized it was going to be the end of that day so Dad began to focus on a particular part of the ceiling and look like actually look like he was focusing some distance, you know in front of the ceiling and he kept his eyes on that one spot without what almost without blinking for about two hours as we sat around talking about this. We should wonder what he's looking at her what he thinks he's looking at.

34:22 I said I think I'll ask him dad. What are you looking at? All this was a man who hadn't talked? Okay and several weeks just as clearly as is he could he took his eyes off of ceiling look me in the eyes and he said Mama and put his put his eyes right back in the same spot. He continue to look that way until he began to lose Consciousness that night the last friend who visited about 11:30 that evening. I said Jeff listen to this I said dad. What are you looking at?

34:51 I definitely said Mom.

34:54 So

34:56 Mom, and I everybody left Mom and I put a CD on which was a recording of old hymns made by a Pianist that he died.

35:05 Hams Dad loved playing very quietly the background mom got on one side of the bed. I got on the other side of the bed and the next several hours we rub down and we prayed over and we told him what a wonderful human being he was

35:18 We sang to him.

35:20 And we glorify God for the life of this.

35:24 Modern-day side

35:26 It got rough as pneumonia deaths to do he got really rough at one point. Mom had to leave the room.

35:33 And she said oh Jesus. How long is this going to go on please? God taken?

35:40 Try to comfort as best as I could finally we realized that we this was dad's last breath turns out it wasn't the strong man took another huge gap, but about another two hours went by and he finally breathe just laughed as he breathed his last with us on each side of the bed Turn Your Eyes Upon. Jesus came on that CD.

36:03 And then greatest I faithfulness mom and I looked up and we saw Dad's Sunset picture that he had painted which was one of my favorites and Mom said

36:16 Beyond The Sunset o Blissful morning

36:20 And why she not saying that?

36:23 And we looked at each other with held hands and we said

36:28 I got.

36:30 And we left one of dad's books in that room too broke a jar and we wrote on it.

36:35 This book witnessed

36:38 The transition the flight

36:41 Of Lester pots debate his master

36:46 On September 15th

36:49 2007

36:51 And we went down to the little chapel and I lit a candle.

36:56 Lester Eugene Potts Jr.

36:59 And we tore fat guy for his life and we left with many many lessons from this.

37:06 In one of the lessons is that dementia is not going to win Alzheimer's disease and not going to win. I want you not know that the human being in the indomitable human spirit is still there.

37:21 And it can be validated and it can be praising uplifted and these people still can give back and they can tell their stories. And so you know, what we're going to do is we're going to use the foundation that we've created inspired by Lester story call cognizant AMEX card with an Amex as the foundation to bring the Arts to folks like Dad.

37:42 And we also have a company called dementia dynamics that is going to educate caregivers ineffective validating methods of care.

37:51 Is there anything else that you want to say in closing about your experience?

38:02 I learned a lot as we all have.

38:04 But

38:06 I think I think the saying that I've that I've learned most of all is Hope always remains and it often is born in situations like this of intense brokeness and loss.

38:24 We don't have much to hang on to it that point but we have our faith and we have the gifts of of a loving God and we have our Humanity. Nothing can take it away. But memories go so we want to validate we went to validate that in praise the human spirit and that's what I want to do in my line of work in the healthcare delivery. I want to do that.

38:53 One of the things that I think is ignored by the medical profession is is is the caregiver.

39:02 The caregivers have such a rough time. It is a 24/7 job and they need to be cared for just as much as the patient.

39:17 I thank you so much for allowing us to tell our story and Danny. Do you want to say anything else?

39:26 Thank you for the opportunity. Thank you Ellen for sharing it with me because you bored as much of this as anybody else and I appreciate it. Thank you.