It Takes Two: Living With Early Stages Alzheimer’s Disease

Show Notes

On the heels of National Family Caregivers Awareness Month and National Alzheimer’s Awareness month, we’re joined by two patient advocates that epitomize this critical intersection. Roger Cochran is a member of the Early-Stage Alzheimer’s Advisory Commission for the Alzheimer’s Association. He has an MA in Anthropology, MS in Health Systems (Ga Inst Tech), a Ph.D. in Sociology, and has worked for over 30 years in community health planning. Roger is also living with Alzheimer’s disease. Dorothy Merrick is married to Roger and is also his primary caretaker. She is passionate about the topic of Alzheimer’s disease and is a powerful advocate for her husband and others living with this condition.

 During our chat, we explore their journey together, as they navigate the challenges that follow the early stages of Alzheimer’s disease.

Episode Transcript

Matt:
Hello everyone, and welcome to the latest episode of This is Growing Old. My name is Matt and I’m the Digital Communications Coordinator here at the Alliance. I’m also the producer of This is Growing Old. So last month the Alliance celebrated National Family Caregivers month and raised awareness of Alzheimer’s and other dementia’s through Alzheimer’s Awareness Month activities. On the heels of those important events, I’m joined today by two very special guests who represent both caregiver and someone living with Alzheimer’s.

Roger Cochran is a member of the 2022/2023 early stage Alzheimer’s Advisory Commission for the Alzheimer’s Association. He has an MA in Anthropology, an MS in Health Systems, a PhD in Sociology, and he has worked for over 30 years in community health planning. Roger is no stranger to advocacy. He has been a professional advocate for access to healthcare for his entire career. Advocating for those with difficult cognition has become personally important to him, especially after his diagnosis of Alzheimer’s.

Dorothy Merrick is married to Roger and is also his primary caretaker. She’s passionate about the topic of Alzheimer’s disease, in particular, the lack of available treatments. Dorothy wants to learn the right questions to ask to solve the challenges of Alzheimer’s, while also learning valuable advocacy tools. In addition to being a Roger’s caretaker, she also works part-time as a licensed real estate broker.

Thank you both for joining us today to share your story. I know that there are millions out there who identify with these experiences, so let’s get right into it. You both are graduates of the Alliance’s Talk NERDY to Me program. For those out there who don’t know the Talk NERDY to Me program empowers older adults to engage in patient-centered outcomes research. Why is patient advocacy, as a part of the research important to you?

Roger:
Well, as someone who’s experiencing an unexpected disease, Alzheimer’s. I was unfamiliar with it and it was a scary term, and so I wanted to be able to take some of that experience and let people know that there is a life after diagnosis and Talk NERDY seemed to be a vehicle for being able to do that. And it builds on my entire career as a professional. So I was very attracted to the program.

Dorothy:
I was attracted to learn more about the Alzheimer’s, but also to the fact that the patient was involved in our discussions as well as the caretakers. So it allowed feedback that I had not experienced from others on both sides. So to me, it was wonderful information to gather.

Matt:
Awesome. And how did you find it, by the way? What led you to Talk NERDY?

Roger:
I think you found it.

Dorothy:
I think it was through the Alzheimer’s Association.

Matt:
Nice.

Dorothy:
I think that’s where Roger originally did a lot of research and made some applications to be part of the program and we joined, and the further we got into it, the more we learned about all the different avenues that would be available to us to get involved with.

Matt:
Yeah. And we’re grateful to have you a part of the program.

Dorothy:
Thank you.

Matt:
So Roger, if you don’t mind, could you share your experiences a bit with our listeners, as someone living with the early stages of Alzheimer’s disease, what’s that like for you?

Roger:
Well, I had noticed over a few years an ongoing reduction in my own cognition. My inability to react appropriately all the time with my clients. And so I was personally aware that there was something going on, but it was not until I had a full neuropsych evaluation by a neuropsychologist that I first got a diagnosis that I was in the early stages of Alzheimer’s. And when I heard that, I was shocked. I was terrified. I could only see myself deteriorating rapidly in my ability to interact with people and carry on normal daily functions. So it was very hard for me to accept the diagnosis and it took some time to come to terms with it.

Part of that was by working through the Alzheimer’s Association’s website and by going through many of the programs and protocols that they had. I learned more about how Alzheimer’s develops, how it affects you, how it affects your relationships with your partner, with your caregivers, with your neuropsychologist, and other people who are helping you. So it was, as I learned more that I became less afraid of what Alzheimer’s meant. I came to realize that it was not like immediately falling off of a cliff. Although sometimes I still feel like I’m scrambling downhill. But the Alzheimer’s Association has been a real boon and benefit for me personally and I think for Dorothy and I.

Matt:
Now speaking of neuropsych, do you experience any neuropsychiatric symptoms? You know, agitation, apathy, depression, if any, and if so, have you developed any coping mechanisms to combat some of these symptoms?

Roger:
Well, when I first got the diagnosis, I was really literally terrified and I saw myself degenerating rapidly into an incompetent state. But as I learned more through working through with my neuropsychologist and some counselors and reading more thoroughly through the Alzheimer’s Association website, I began to see that this was really a long-term slow progression. It’s a disease that doesn’t come upon you immediately. It builds slowly and because it builds slowly, you have an opportunity to adapt to it, to secure resources to help you work through it. And to work with, in my case, a partner who’s been very supportive of helping me deal with the…

Dorothy:
The symptoms.

Roger:
With the symptoms and outcome that we’re facing. So finding the Alzheimer’s Association website was key. Having a neuropsychologist who was supportive was important. Having a neurologist who was supportive was important. So having a team of people help me work through it has been something that’s given me a view of this as a long-term, slowly progressing, disease that I can work with Dorothy and my team to reduce my anxiety and to help me be able to function as long as possible in my community.

Matt:
Right. I was just thinking of the word community and how important that is in creating a support system around you. They’re the clinicians and health professionals, but Dorothy and your family probably play a major role in supporting you around this time.

Roger:
Yes, they have. They’ve been my primary support. I’ll have to admit that it has taken me some time to be able to tell friends and people in the community that, “The reason I’m not reacting to you as I used to is I really don’t remember you and the reason I really don’t remember you is that I’m in the beginning stages of Alzheimer’s.” So I’ve been able to share that with some of the people, not everybody, but some of the people who are close friends in the community. And that’s given me a sense of some community support that I had not really realized I would want or need. So I’m working to build my skill set there.

Matt:
Absolutely. So for those out there who have not been impacted with Alzheimer’s or other dementia’s, is there anything that you would want folks to know about Alzheimer’s? Or better yet, how can folks who’ve never experienced it better support people with Alzheimer’s?

Roger:
Well, if you’ve got someone who seems not to recognize you and you’ve known them, simply accept where they are. I would not recommend saying, “Do you have Alzheimer’s?” But just say as, “I know it’s been a while since we’ve seen each other. How are you doing? Tell me a little bit about what’s going on.” Just engage in a conversation with them and as they build confidence in themselves and in your relationship with them, hopefully they’ll be able to share some of what’s leading to apparent changes in your relationships.

Dorothy:
And I can add to that by sharing that, what we’ve discovered is that this disease is not just an old person’s disease. This affects people of all ages, and it might be even athletes due to head trauma and other things. So just because a person is of old age, their memory loss may be natural… Or not natural, but there may be memory loss and a lot of younger people as well due to the beginning stages of Alzheimer’s that haven’t been diagnosed. So we’ve learned a lot about that as well.

Matt:
Yeah. Yeah, absolutely. I always think about our work at the Alliance. We focus on age-related illnesses, but everyone can gain something from these conversations because we’re all aging. And we are all impacted by many of these conditions. And just because you’re younger does not mean that you can wait until later on in life to care. So, I think that’s really important to note.

Roger:
And just to add a little bit to that. Just because you have physical strength and ability and skills, does not make you immune to Alzheimer’s. Through the Alzheimer’s Association, we’ve met and know people who are triathletes in their forties who are dealing with early-onset Alzheimer’s. So your physical capability is not necessarily a guarantee that you’re not going to deal at some point with Alzheimer’s or a similar degenerative mental disease.

Matt:
Absolutely. So for those out there listening, keep going to the gym, but also…

Dorothy:
Exercise your brain.

Matt:
Exercise your brain too. Yeah, absolutely. That’s a note to self. I’m actually speaking in the mirror. So Dorothy, I’d love to hear your perspective. Can you tell me what you feel are some of the biggest challenges that caregivers face?

Dorothy:
Well, the biggest one is to recognize and accept that maybe this is not the life you planned with your partner, but it’s with the life that you have and it’s now time to make the best of that. And I think that was the first thing that we did. Or that I did as a caregiver. My second note that I made is that to know that in caring for Roger, I’m not doing it for him. I’m asking him what does he need and then I tell him what I need. So it’s a partnership in that respect.

The other thing is that, as we mentioned earlier, good health is not just the body, it’s the brain and it’s also part of your spiritual, whatever that is for you, whatever that means to you. I think at this point, good health involves all of those pieces, what some people call it soul, some people call it spiritual, it’s the body, the brain, and that part as well. And the last thing is, I think to maintain a good attitude. This is going to have some good days and it’s going to have some not so good days. And I think if we can both look at that and expect to have the intention of good attitude, we will make the best of it.

Matt:
Wow.

Dorothy:
Those would be my tips.

Roger:
And I would just add on top of that, that if you’re fortunate enough to have a partner, it becomes teamwork. And it may be a different kind of team than you had anticipated when you set up the relationship. But it is, for me personally, tremendously important to have the support of Dorothy. And as we’ve let some of our family members know what’s going on, to have their support too. So it can be a much broader family dynamic. Not to say that everyone in the family is going to understand because some don’t, but it’s good for them to know what’s going on and why your reactions may not be what they had expected from you, from past experience. Build your network as widely as you can.

Matt:
I love that. And what I really love is that though these are specifically important to those with Alzheimer’s, other dementia’s or being a caregiver for someone with this condition. But this is just really great relationship advice. I think whoever listens to this could probably apply this to the relationships in their life, including myself. So thank you so much for that. I’m taking notes right now. So yeah. Speaking of relationships, you’ve been married for over 30 years as well. How has that relationship evolved since Roger, your diagnosis of Alzheimer’s?

Roger:
Well, both of us, prior to this had been heavily involved in our business. And we were both co-partners in a business and both brought in roughly equal amounts of income. So for me, I’ve had to accept that my ability to contribute to our business relationship has changed. Where I used to do all the taxes and take care of the financial problems, I realized this year I couldn’t even begin to assemble the tax information that was needed. And I worked for several weeks on it. And I turned it over to Dorothy at the start of January this last year, and she finished it in two days. I was astounded. And very glad to turn it over to someone who could work through what had taken me weeks to present to her. So this has meant some real changes in my understanding of my own competencies and what I can contribute both to our business partnership as well as to our personal relationship. So we’ve, I think, both grown in unexpected ways.

Dorothy:
That’s true. But also I think we’ve developed a better and probably a deeper sense of trust. Because it’s the openness that we can share the problems, it’s the compassion that we can show each other. It’s Dorothy learning patience, because that’s not one of my strongest virtues.

Roger:
But one of her virtues is recognizing.

Dorothy:
That I need to be more patient.

Roger:
Yes.

Matt:
You sound like me.

Dorothy:
But that’s what I think it is. It’s really, it’s that connection of openness, trust, and learning to be forthright with it, with each other.

Matt:
It sounds like you two are a power couple in the most classic sense. So on to two of my favorite questions. We ask all of our guests here, on This is Growing Old. The first question is, when you were a kid, what did you imagine growing older would be like?

Dorothy:
You talked about fireflies.

Roger:
Yes. When I was a kid, I thought I would be able to catch more fireflies as I grew up. And we lived in a community where there were a lot of fireflies so I was really looking forward to that. But I had no clear idea about what it meant to become an adult. My family had not gone to college, so I didn’t know what that meant. And so as I grew up and I had to experience things about a changed world for me. Part of that change was going to college and learning how to successfully fail in classes, some of it. After my first year, and at Georgia Tech, I ended the year with a 0.6 average, but six years later I graduated with a 2.6, which doesn’t sound all that good, but it put me in the top quarter of the class.

So part of what I learned from that was that growing up and growing older brings a lot of changes. And so you don’t know what’s necessarily going to happen next, but I think my going to college did prepare me in many ways for my ongoing life. I’ve had an enjoyable career. It prepared me for a relationship which I really enjoy and appreciate, and it’s given me some skills that I’m continuing to use as I learned what it means to grow older and to lose some of my prized cognitive capacity.

Matt:
Wow.

Dorothy:
Well, let me just share with you. Growing older for me was very simple. I grew up in a very big family. I was the oldest of six children. We were all 18 months to two years apart. So all I could think of was, when I grow old, I want to have my own bedroom. I want to have peace, I don’t want to have chaos in my house. I want to have a quiet place. And to me, the freedom of growing up meant that I could find that. Because my big family, it was always a lot going on. So I looked for that quietness and that was something that I was… And I think growing up, that’s what I enjoyed, is that freedom of time that I could make my time.

Matt:
Yeah. Yeah. I love that. And after hearing so many people answer this question, I realized that, that idea of what growing older is, is always evolving as you grow.

Roger:
Yes.

Matt:
I love how when you were younger, all you thought about was catching more fireflies. And I’m also glad you didn’t say lightning bugs, or you just having your own room. When I was young, my only idea of growing old was having a car and a mustache. So now, that is changing. It’s changing quite a bit, but I just love hearing people’s perspective on that question.

Dorothy:
That’s a good one.

Matt:
Our second question is, what do you enjoy most about growing older now?

Dorothy:
Well, for me, it was the freedom of my time. That I’m able to take my time and make it what my intention is. So that if my intention is to do a certain amount of work, then I have that time, that freedom to be able to do that. That’s what I enjoy about that. Being older and being able to make those selections.

Roger:
And for me, as I’ve grown older, I’ve been able to give more time to my spiritual path. I’m a practicing Buddhist, and so I’ve been able to engage in my Buddhist practice some more continuously, and that’s brought some more depth to me and my personal experience. So that’s part of what growing older has meant for me.

Matt:
Oh, that’s great. I could really just go on and ask a million more questions that’s evolving from these two, but we’re coming up on our time. I just want to say, thank you both for taking the time to chat with me about this topic. As I said in the beginning, there are millions out there who really identify with the experiences that y’all have had, and it’s really inspiring to see the level of resilience that you take with you every day. I didn’t think of a closer here.

Dorothy:
Well the closing might be as simple as, may you be well.

Matt:

I love that. I love that. That’s great.

Dorothy:

That’s part of our Buddhist training. May you be well.

Matt:
This is Growing Old. If you would like to learn more about our Talk NERDY to Me program, or would like to find resources on the symptoms and treatments for Alzheimer’s and other dementia’s, please visit us at www.agingresearch.org. Thanks again y’all.

Dorothy:

Thank you.

Roger:

Thank you.