17 Years of Caring for My Wife with Alzheimer’s - Lessons Learned

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17 Years of Caring for My Wife with Alzheimer’s - Lessons Learned

A spirited mother and civic activist, Martha Maddux had just turned 50 when she was diagnosed with early onset Alzheimer's in 1997. Her husband Carlen was a career journalist, editor, and magazine owner in the Tampa Bay area who also was Martha's primary caregiver for 17 years. Carlen is the author of the book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer's.

A spirited mother and civic activist, Martha Maddux had just turned 50 when she was diagnosed with early onset Alzheimer's in 1997. Her husband Carlen was a career journalist, editor, and magazine owner in the Tampa Bay area who also was Martha's primary caregiver for 17 years. Carlen is the author of the book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer's

 

Transcription

 

Frank Samson:                   Well, welcome to Boomers Today. I'm Frank Samson, and of course, each week, we bring you important useful information on issues facing baby boomers, their parents, and other loved ones. Welcome to Boomers Today. We have a great show this week. We have with us Carlen Maddux. He is the husband of Martha Maddux, a spirited mother and civic activist, who had just turned 50 when she was diagnosed with early onset Alzheimer's in 1997. Carlen is a career journalist, editor, and magazine owner in the Tampa Bay area, and also was Martha's primary caregiver for 17 years. Carlen's going to talk to us about that experience, and he's also the author of a book called A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer's.

 

                                             Carlen Maddux is joining us now on Boomers Today. Welcome, Carlen.

 

Carlen Maddux:                 Frank, good morning. Good to talk with you.

 

Frank:                                  Great to talk with you as well, and thank you for taking the time to join us and share your experience with us today. I know I gave a little briefing on time with Martha, but maybe you could give us a little more history on what happened and overall experience and some other questions.

 

Carlen:                                Yes.  One question I'm frequently asked is, "Did you see any signs before the diagnosis?" And as you mentioned, Martha was 50 years old. I was 52. Neither one of us had been thinking at all about Alzheimer's. I'm not sure I'd even heard about Alzheimer's at that age. We had three children, one was still in high school, two in college at that point. We were a fairly young family.

 

                                             Martha, as you mentioned, was a civic activist. She was also very involved politically. She ran several campaigns here locally, and then she served on the St. Petersburg city council in the mid to late '80s. Her diagnosis was in 1997. The thing that was most noticeable in advance of the diagnosis was, the year before in 1996, Martha decided to run for an open seat in the Florida state legislature. She was one of four candidates. I thought it was hers to win because of all of her involvement and contacts and networks here.

 

But there was one event that was the most significant event in the campaign that Martha was speaking at, along with the three other candidates. In the format, the audience would ask a question and each of the candidates had to respond to that question. I'd seen Martha in dozens of situations like this, she was always giving a common sense answer, it was to the point, it was civil. She just was very responsive and quick on her feet. On this day, about a year before her diagnosis, on this day when all the questions that were asked, Martha had to ask for every one to be repeated. I didn't know what was going on. And in her response, it was just slightly off. It didn't quite make sense with the question that had been answered.

 

                                             When we got home after that, I said, "Martha, what was going on? What happened up there?" And she said, "Well, what are you talking about? Everything was just fine." I knew something was going on at that point. I didn't know what. Martha wound up losing that primary by 20 votes, which was disappointing at the time, but in hindsight, I was very glad that she did. That was the first cue to me that something needed to be checked out. It took our children and me probably nine months to get Martha to visit a neurologist. She was forgetting names more frequently and forgetting appointments more frequently. If you're in business or in politics, you just can't do that kind of thing. So we did get an appointment in July of '97 for Martha to visit with a neurologist. She went by herself, and when I got home from work that evening, I asked her how it went and she said, "Well, I left because he was just taking too long to see me."

 

                                             And I said, it had taken us two to three months to get this appointment. We had to start the whole process over again, and in early September of '97, we got another appointment set. I went with Martha this time. Then we went through the battery of tests, and it was a couple weeks later that we got the diagnosis on this, Frank. Now Martha, she was just a very energetic person. She loved dancing, she loved hiking, she loved tennis, she loved being involved with people and talking and whatever. This was the Martha I knew for 25 years, and so to see her lose her confidence all of a sudden and not remembering everything, it was a real shock. It was a real hard thing for me to get used to and for our children to get used to initially.

 

                                              So that's a quick background on sort of where we got started.

 

Frank:                                  Right, right. I knew you were her caregiver. Was she home that entire time of 17 years, or was there any a point that you felt caring for her at home was maybe just too much?

 

Carlen:                                 Yes, there was. Martha spent the first decade at home. The first year or so, I lose track of time at this point, but the first year or so, I would go to work and Martha would still be driving and running errands and whatever. She was still very much able to do those kinds of things. But after the first decade, it was time to move Martha into a nursing home. Before this I was fortunate enough to be able to have two caregivers come in alternate days during the week, Monday through Friday, to come in and take care of Martha during the day. Then when I would get home, I would take over as caregiver at that time.

 

                                             We did that for a decade, and when she moved into a nursing home in early 2008, Martha was not able to talk much. It was mostly gibberish. She was at a point where she was not able to feed herself too well, not able to take care of herself, and not long after moving into the nursing home here in St. Petersburg, Florida, she just was not able to walk. A lot of systems had begun to shut down in her body and mind at that point.

 

Frank:                                  So Carlen, I know you're the author of a book, it's called A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer's. We're going to talk about your book in just a few minutes, but there was something you wrote in your book I'd love you to comment on, if you would. You wrote that, "the best advice I ever had in caring for my wife, I learned in the first grade." You refer to it as, "stop, look, and listen." Expound upon that a little bit if you would.

 

Carlen:                                Yeah, I can. That's not just what I learned. I'm sure you learned that in the first grade, Frank, and I'm sure a lot of people listening in the audience learned that in the first grade. You walk up to, you're going to school and you want to cross the street and there's a little guard right there, just have you stop and you look both ways and you listen for cars and whatever. It was just really important. Martha's life and my life were very, very active. Sometimes we felt like we were just ships passing through the night with our different careers. It was, this news of Alzheimer's just brought everything to an abrupt halt. Our world was not turned upside down by that, it imploded before us. We were just struggling to just get hold of something.

 

                                              It just became very important with different kind of behaviors that Martha began to be showing, for me just to not try to correct her, but just stop and just sort of pay attention to what Martha was trying to say and what she was meaning with what she was trying to tell me. And that was not just a one time learning process, this was an ongoing process for all of the 17 years that we were going through this. In hindsight, as it turns out, in hindsight it would have been great advice from the very beginning of our marriage, through the first 25 years, of just, we just need to stop and need to pay attention to each other and need to listen to what, not the words, but just what is it that I'm hearing here that is important to do. Because if anybody who has lived with another person with dementia or Alzheimer's knows, there's going to come a point where the traditional communication systems that we have, you speak and I listen, is going to evolve to a much deeper listening process.

 

Frank:                                  Got it. I know we have a number of people listening to this show who are about to go through a journey similar to yours, or are going through it right now. Can you tell us about some of the hardest lessons you learned through the 17 years of your journey with Martha that you could share with others?

 

Carlen:                                 Yeah. Well, something you should know about me, is that I’m essentially a perfectionist. I've always been a perfectionist ­­–– I like to dot every I and cross every T. Perfectionism and this kind of a situation just does not work. I began to beat myself up, I began to lose patience with Martha. I remember early on talking with a friend, I was sharing with him what was going on in my life and whatever, and he just said, "Carlen, I think what you need to do here is you need to learn to be gentle with yourself. You're not going to be perfect, you're going to make mistakes, you're going to need to respond to those mistakes and come back from them." So that was something hard that I had to come to accept and understand, and to be honest, I'm still learning to be gentle with myself.

 

                                             Another thing was beginning to understand that deep within each of us, I as a caregiver, Martha as the one living with Alzheimer's, we all have spiritual issues that are just deeply embedded within us. I know that Martha had some real resentment issues toward her father. I had resentment issues as well coming out of my upbringing. These things really need to be addressed, otherwise they become real obstacles. I don't really care what faith you come from or out of, or if you're of no faith, these are things like bitterness and fear and anxiety that should be addressed. I learned that if I let those control what I was trying to do and what Martha was trying to do, they would consume me.

 

                                             Being a caregiver can just wear you down if you just don't take time to try to figure out, and to figure out your own needs as well. I was very shy about asking friends for help and having friends come over and be with Martha while I got a break. I went out, went walking, went talking to myself. One of the most important things that happened to me after our two oldest kids graduated from college and came home, they came to me one day and they said, "Dad, we would like to offer you one weekend a month off."

 

Frank:                                   That's fantastic.

 

Carlen:                                 I was all for it. I wound up spending most of those weekends in the nearby monastery. I tried to spend it out at the beach, but there were just too many distractions out at the beach for me. So I wound up spending it at a monastery where I could get as involved and connected with the brothers there, and I could just vent. I could argue with the orange trees there if I wanted to. I could go walking, I could just whatever, go take a nap. Just not have to be responsible for about a 48 hour period was just a tremendous break. Just once a month. So that's an important kind of a lesson to learn, too. My mistake was, I waited for people to come to me rather than going to folks who wanted to help but didn't know how they could help.

 

                                              Early on, if I had learned that lesson, I could have saved myself a lot of grief.

 

Frank:                                   As a caregiver, you have to be healthy. If you're not healthy, if you're not clear, then it's going to make it much more difficult.

 

                                             Now, I’d like to shift gears a little bit and ask you about your book if we can. I'd like to ask you a two part question here, Carlen, maybe you could give us an overview of the book and what inspired you to write it. I know you have a background as a journalist, so it might have been a natural for you. But part two question is, why you feel it might be important for other caregivers to break out of their oftentimes isolation and share their stories as well.

 

Carlen:                                 Yeah. Thank you. Going through this odyssey, I did not intend to write a book. There are a lot of good guide books out there right now, but there were not many back in 1997 when Martha was diagnosed, but there are a lot of good guide books. Alzheimer's is not the focus of my book. Alzheimer's happens to be the context. The focus of the book is the spiritual path, the spiritual odyssey that unfolded for us during these 17 years. I had four hard things, the toughest things I had to deal with going through. The first one was just getting the news about the Alzheimer's. The second was a couple of years after that, having to take the car keys away from Martha. A third one was about five years deep into this path, Martha had a full on seizure, which I had never seen before and I don't want to ever see one again. That was critical. And a fourth thing was having to make the decision to move Martha into an assisted living nursing home.

 

                                             During this time, right after we got the news about Alzheimer's, when we got home, Martha and I had a very long, deep cry. As soon as we got through, Martha looked at me and she says, "I do not want to tell a soul. I don't want to tell my parents, I don't want to tell our children, and I don't want to tell my brothers and I don't want to tell my friends." Obviously there's a real stigma associated with some kind of mental disability like Alzheimer's or dementia, and it still is there. It's something that really needs to be addressed and worked through as soon as you possibly can.

 

                                             This revelation is sort of the opening of my book. Martha and I talked and we decided on one person that she was willing to talk to. This one person was a retired Presbyterian minister here in St. Petersburg who had been good friends with Martha before we met, before Martha and I met, and who had married us and the baptized a couple of our children. His name was Lacey Harowell. Martha was willing to have Lacey come and share with him our news. I called Lacey and he said, "I'll be there tomorrow." I didn't tell Lacey what it was about. But he showed up at the doorstep. He comes into the room and Martha and I sit on the couch and he sits in a chair opposite us. We have a little chit-chat, and then Martha looks at me, nods to me to start the conversation. It was a very short conversation.

 

                                              I said, "Lacey, Martha's been diagnosed with early onset Alzheimer's." And this bigger than life kind of man just sort of shrunk into the shadow. He nodded at me to swap seats with him and we did, and he put his arm around Martha, and at some point after we had another cry, said, "You know, I have a good friend in Kentucky who is the retreat director with the Sisters of Loretto community there. Her name is Sister Elaine. I've sent a lot of my friends to visit with her, people who have one kind of crisis or another. She has about the best gift of discernment I have ever encountered in my life." He said, "I don't know what you would get out of the visit, but I think it would be very meaningful for you if you do, so I would encourage you to think about doing that."

 

                                              And then Lacey got up and left us. Martha and I talked about it, and I called this Sister Elaine. Three weeks after her diagnosis, Martha and I drove from St. Petersburg up to Kentucky to visit with her for about a week. And that's where the concept of the "path" that I talk about in my book, A Path Revealed, began to open up. It was just a very important time for us. I don't have time to get into all that she said, but as we left, these were her parting words to us. I've discovered they were not quite that easy to understand, but she said, "Your main calling at this time, Martha and Carlen, is to trust that you belong to God and not to yourselves, and to deepen your love for God and between yourselves."

 

                                             I remember thinking, "We should be able to do that," as though it would be a simple thing to do, when in reality it has become a lifetime learning experience, learning how to deal with that. We began to find mentors, counselors, people who could help us and help direct us as we moved forward. It's very important, as I share our story in my book, for anybody to be in a support group. That's what I'm getting feedback that people are picking up out of my book.

 

                                             As I said, I didn't start off, Frank, with the intention of writing a book. In fact, I didn't even think about it. But Lacey and a couple of other good friends were encouraging me to think about doing that. What I did do in the beginning, which was very important, was I began to keep a journal. It was not a journal for spiritual reasons or for whatever else, for journalistic reasons. I had a lot of information coming at me, and I kept this journal up until the time Martha went into the nursing home in 2008. 14 volumes later, I had the backbone of information for my book.

 

                                              I remember when I decided, "Okay, maybe I need to write this book," I hadn't looked at this journal in five or six years. As I opened up and I said, "Oh my, this is raw. This is raw. I don't know if I can do this." But somehow I got through that and was able to piece my story together and share the experiences with the people who have read the book. It's very meaningful for me.

 

Frank:                                  I'm so glad, so glad you did it. I hope it will give incentive to others to share their stories too, because that's how we're all going to learn and deal with this. It's just a horrible disease, but to deal with it better.

 

                                             So, how would people get the book?

 

Carlen:                                 A couple of ways. One is, obviously on Amazon online, Barnes & Noble online. You can order it through any bookstore, real bookstore. I do have a website that I write a blog, it's called Carlen Maddux, CarlenMaddux.com. If you're interested in following my blog, you can sign up there at no charge.

 

The other thing I just want to mention in terms of sharing our stories, Frank, is that you don't have to write a book to share your story. You just need to be with people of a similar experience who know what you’re going through, and you know what they're going through. That's where these support groups can be so beneficial. I just would really encourage people to try to find one that works for you.

 

Frank:                                  Carlen Maddux, thank you so much for joining us on the Aging Boomers. I really appreciate it, thank you.

 

Carlen Maddux:                 Thank you, Frank.

 

Frank Samson:                    Yeah. And thank you all for joining us. Just be safe out there, and we'll talk to you all soon.