Transcription of Leon Duff for the show Alzheimer’s, #114
Dr. Lisa: Many listeners of the Dr. Lisa Radio Hour and Podcast have themselves dealt with family members needing care at the end of their lives, and many listeners I’m sure have had family members with dementia.
Our next guest is Leon Duff. He is a board member at large with The Hospice Volunteers of the Waterville Area. He was the past President of The Hospice Volunteers of Waterville Area and many other things. Most importantly, he had a wife with Alzheimer’s and cared for her for 10 years before her passing several years ago.
I first read about Mr. Duff’s story in the book, ‘A Healing Touch: True Stories of Life, Death and Hospice’, edited by Richard Russo which is a fundraiser for The Hospice Volunteers of Waterville Area. Thanks for coming in and telling us about your story and the work that you’re doing.
Leon Thank you so much for having me. It is a pleasure to share my experience and hopefully I can encourage other people to become engaged in helping other people.
Dr. Lisa: That’s an important thing to talk about first, which is that you’ve been involved in helping people pretty much your entire life, but especially your adult life. You’ve had more than 45 years in education and 22 years spent as a Superintendent in school systems.
Leon: That’s true. Even in education, if you’re not in it to make a difference to help the students grow and to influence the parents in the involvement of the students, then I don’t know why you’re there. The same applies to taking care of someone who in my case, my wife, Anne had Alzheimer’s disease. I’ll tell that story a little bit.
Dr. Lisa: All right. Let’s start with first, a little bit of your background. You are from a small town up near Houlton in the County, you are the ninth of 10 children, and I’d like to hear you elaborate a little bit on that.
Leon: Okay. I was born and brought up on a potato farm in [Derry in Hodgdon 00:30:55], as you mentioned, nine of 10 children and there were seven boys and three girls, and what’s interesting about our family I think most is that nine out of the 10 of us have post-high school degrees. My parents had a ninth grade education. They were born in 1896 and 1897.
I went to a one-room school house which we all had to walk to. There were anywhere from 30 to 35 students, one teacher in all grades from kindergarten through the eighth grade. Then, I went to Ricker Class School Institute in Houlton which is a private school and became acquainted with Anne in a geometry class. This was our sophomore year and she said to me, “Do you have any brothers and sisters?” Then I said, “Yes. I have six brothers and three sisters.” She said, “How can you remember all their names?” I thought that was pretty funny.
We dated pretty much off and on during our junior and senior years. Then, Anne’s father was a graduate of Colby College, and of course he wanted her to go to Colby and her older brother was at Colby at the time. She went off to Colby, and I went off to Bob Jones University in Greenville, South Carolina because some of my siblings after the war went there for a college degree.
After about a year and a half, she decided she wanted to become a nurse and Colby didn’t offer an RN degree. She transferred to U Conn, University of Connecticut in the five-year program, because that was required by U Conn to get a Bachelors Degree and an RN.
After I graduated, majoring in Education which I switched in my junior year, I said, “You know, if I could get a job in the New Haven area, then we could get married.” I applied to a couple of districts there. I was offered a position in New Haven, Connecticut. We went to the beach in East Haven after I had signed the contract and we set a date to be married, which we did.
Then, Anne finished her degree work and I was teaching at Bassett Junior High in New Haven which was a 96% black school and four percent poor whites and whatever. That was a challenge.
Growing up in Aroostook County, going to a private university, and then ending up in a junior high school, that was really challenging. She finished up her work. She did some filling in at the hospital there, Yale-New Haven and then she became pregnant and we had a child in the second year there.
Dr. Lisa: How old was Anne when you first started to notice that things weren’t quite as sharp when it came to her memory?
Leon: She was about 57. We had already experienced her father who had dementia. They were calling it back then ‘Hardening of the arteries’ as I recall. It was clearly Alzheimer’s. His siblings all died with dementia and grandfather on father’s side. It’s clear that it’s in the genes. We were having difficulty and then I had her go in for testing, and she was about 57. The diagnosis was pretty clear and so I knew what I was into and she knew what she was into because we had experienced that with her father. It was challenging for her and her mind went first. Couldn’t remember an example.
She drove to Waterville which is only six miles away. When I got home in the evening, she looked at me and she said, “I had a terrible experience today.” I said, “What’s that?” She said, “I was in Waterville and I had finished what I needed to do there and I couldn’t remember how to get home.”
Soon after that, we were up north and we were driving two vehicles back home from Bangor to Vassalboro. I said, “You just follow me.” We got down to about [Albian 00:37:32], and she’s falling behind. It’s early evening and she’s falling behind and falling behind, and so I signaled, pulled over, she pulls up behind me and I said, “You got a problem? You need to be closer to me so that I can see you in my rearview mirror.” She said, “I kind of had a blackout, so I slowed down. I’m not really sure. I know I’m supposed to be following you, but I had a little blackout so I started slowing down.” That was pretty much the end of her driving, but her mind went first. Physically, she was still reasonably normal.
She used to keep the checkbook and all that sort of stuff, and she approached me and then said, “I can’t remember how to write the checks.” Little by little, it was getting worse.
I was working full-time as a Superintendent. That’s at least 60 hour a week job, so I had some friends who volunteered to come and visit her during the day. Then I got involved with an agency, Helping Hands in the area, and I started with part-time help, someone coming like 10 o’clock in the morning until two o’clock in the afternoon, help her get lunch and whatever and then she’d be okay until I get home.
That lasted a little while. She didn’t relate to some of the people from Helping Hands. Finally, there was a young gal. She was probably 20, graduated from high school and taken the course at Helping Hands and then married and she came. Anne just blossomed right up to her. She was with me part-time for quite a long time, and she got pregnant, had a baby, and that was a miracle for Anne because she would bring the baby in and when she would walk in the house, it was just a whole different world, and she would put the baby in her arms sitting down of course. It was like she had gone to heaven. It was just wonderful.
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Dr. Lisa: Now, Mr. Duff, they call Alzheimer’s ‘The long goodbye’. This process started when Anne was 57.
Leon: About, yes.
Dr. Lisa: You took care of her for 10 years. What was that like to know that she had had a father and other relatives that had died of Alzheimer’s, that this disease was going to be what it was and that it wasn’t going to get any better, and that you are going to lose this woman you had known since your high school years?
Leon: I realized I’d already lost her because she couldn’t communicate with me, she couldn’t call me by name, and she would be puzzled with one of our kids came to visit about, “Who is this?” I lost her early and I knew it and we had experienced that with her father as well. To what degree, she really understood that I can’t tell you because it couldn’t communicate that. I kept her at home as long as I could, I got hospital bed sheets and things like that because there were accidents and whatever, and then finally, I said, “I cannot do this anymore.”
One of my daughters and I explored some nursing homes. Anne’s mother who was about 91 at the time is still living independently at home in Houlton, begged me to put her in the nursing home up there. She said, “Then I can go and visit.” That was three hours away from me and I want to say two things about that. That was an absolute excellent decision that I made to put her up there for her mother and for me, because I was worn out. I dropped 30 pounds taking care of her at home, and the emotional impact is I didn’t care if I ate or not. Those are routine kinds of things. It wasn’t that I was in denial, it’s that it’s too big a weight.
Giving care to someone who has dementia is very different than taking care of someone who just has, I must say, Hodgkin’s Disease or something because I’ve had experience with that as well.
Dr. Lisa: Can I read something from this book?
Leon: Yes. Sure.
Dr. Lisa: This book is ‘A Healing Touch: True Stories of Life, Death and Hospice’. This is a fundraiser that Richard Russo, Pulitzer Prize winning author and friend of yours wrote to benefit the hospice volunteers of the Waterville Area. This is a story that he tells about you.
“When he was 10, one of his many jobs was driving the tractor, and one particular autumn found him harrowing a field long after dark. It was bitter cold, frightening work for a kid all alone on a tractor travelling over unlevel terrain. The tractors had lamp shown off into black woods that surround the sloping field on three sides, occasionally locating bright eyes among the trees. A cat’s eyes? A dog’s? A deer’s? A bear’s? No, probably not a bear’s, but maybe if it was a bear, could he outrun it? No. Even trying would risk death or dismemberment. You don’t jump down from a tractor in the dark, not when it’s trailing a harrow. Lee doesn’t remember how much of the field he’d worked when the pin that attached the harrow to the tractor either broke or popped free, but he heard it go and felt the harrow detached. He also knew that it was pointless to search in the pitch darkness for a pin that was probably broken anyway. He knew his father would not be pleased, but what choice did he have? There was nothing to do but drive the tractor home. He remembers thinking, “I can’t reverse what’s happened. I can’t control it. It’s gone.” When he got home, his father was more than displeased. “You don’t come home with the job undone,” he explained. Life demanded that you be resourceful. Problems had solutions. He should have found a way. He’d not only failed, he’d done the one unforgiveable thing, he hadn’t tried.”
Is that a very interesting thing to be a 10-year old and being told that there’s always got to be a solution, and then to be several decades later, a man whose wife is diagnosed with Alzheimer’s disease and not be able to find a solution?
Leon: There isn’t a solution. There is a process that you have to go through and hope for the best ending. My father was the one who said, “Fix it up. Wear it out. Make it do or do without,” which means that instilled in me was look at the situation and find a way to address it, to resolve it if you can.
I think my upbringing was extremely valuable in times of crisis, because it is a crisis, even in my work as a Superintendent, there were times when there was crisis, and how do you go about dealing with it.
One of the things that I think I do is listen and ask questions and ask for help. That usually gets a much better resolution to the issue. It reminds me that a person with dementia often mixes up days and hours and whatever … “Today is Sunday. We’ve got to go some place. Well, it’s Wednesday.” It doesn’t make any difference to the dementia person and I have seen the caregivers try to correct that.
I learned that it’s okay to lie because it doesn’t make any difference, and in fact it only aggravates because they’re being corrected and corrected and corrected. I’ve used that in my hospice work very, very effectively, and I think that that is helpful.
Dr. Lisa: Let’s talk about your hospice work and about volunteering, because I know that this is something that has been very important to you. Just for example, we know that 37,000 Mainers are struggling with Alzheimer’s disease, and that’s just one group that needs care. There are lots of other people that need help including the caregivers of the people who need help. You’ve been not only the President of the Hospice Volunteers of the Waterville Area, you also have served community impact teams for the greater Waterville Area at United Way, and also the Kennebec Behavioral Health Foundation Board in the finance committee. You’re somebody who really believes in volunteering. Why is volunteering so important and what type of difference can people make?
Leon: I adopted the motto that, “As long as I am able, I want to make a difference.” If I have some experience background, talent or whatever that I can give, then I want to do that. I was invited to join hospice probably a year after Anne died just before she turned 66 years old. By the way, her mother died about a year before Anne died, and we did not tell her, because it didn’t make any difference and we didn’t want to add anything to her stress.
By the way, an important thing as a volunteer is you need to be very cautious about what you talk about in the presence of someone who has dementia, because they can’t respond but I don’t know whether they process it in any way or not, so you don’t do that. All that you chat is fun, friendly and caring.
The executive director of Hospice at the time who knew Anne invited me. What attracted me really to hospice was the support groups that they run for people who have lost a loved one primarily or someone who is going through a process at the present time. Those are dynamite and effective.
I took the training and to be sure I understood in all of that. It is absolutely essential in my opinion to make a difference in whatever way it is, whether it’s fixing a garage door for an old lady which I did yesterday, or staying overnight as I did a few weeks ago for a man who has severe Hodgkin’s Disease, and I just continue to do that. United Way is also a group. I serve on one of the three community impact teams which recommends the support, financial support for agencies and whatever around the area. United Way for example does a great job of making connections between groups to avoid duplication and things like that, and then Kennebec Behavioral Health of course serves clients who are in desperate need usually. Serving on the boards is just making kind of policy decisions but I see that as well.
I have a quote that I want to give to you. My definition of a volunteer and I didn’t originate this. I don’t know where I got it, but it’s stuck in my head and I use it a lot, “A volunteer is a person who will do for nothing what most people won’t do for anything.”
Dr. Lisa: Mr. Duff, we know that your time is very valuable and we’re very glad that you’ve spent time talking with us today. We encourage people who are listening to go online, learn more about the Hospice Volunteers of the Waterville Area. Learn more about the greater Waterville Area at United Way or perhaps the Kennebec Behavioral Health Foundation. Also, I was very moved by the book edited by Richard Russo, ‘A Healing Touch: True Stories of Life, Death and Hospice’ which is a fundraiser for Hospice Volunteers of the Waterville Area, so I encourage our listeners to find a copy of this book, read your story and other stories like it. Thank you so much for all the work that you’re doing and all the volunteer work that you’ve made the world a brighter place by being a part of.
Leon: If I can reach that goal, I will be very pleased and thank you so much for having me.
Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast, show number 114, ‘Alzheimer’s’. Our guests have included Dr. Tess Gerritsen and Leon Duff. For more information on our guests and extended interviews, visit ‘Doctorlisa.org’.
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