Leigh Callahan (00:02):
The caregiver is the person providing the dignity and the support for the person with Alzheimer's. And the caregiver or care partner has to have support and guidance when they have to say, no, you're not going to be able to do this, because they're going to be the person dealing with either the anger and the rage, but they're also going to be the person, you know, if somebody continues to drive and they have an accident, dealing with the guilt of why did I let this person continue to drive?
Opening (00:36):
Welcome to BrainStorm by UsAgainstAlzheimer’s, a Patient-Centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, “Slow Dancing With a Stranger.”
Meryl Comer (00:56)
This is BrainStorm and I’m Meryl Comer with our continuing series on breaking through the silence and stigma of Alzheimer's disease. Our guest is Leigh Callahan, a respected epidemiologist and outcomes researcher who focuses on rheumatic disease, her husband, Dr. John Winfield, at a distinguished career as a researcher and rheumatologist until Alzheimer's changed their lives forever. Welcome, Leigh. It's great to have you.
Leigh Callahan (01:24):
Thank you, Meryl. It's a delight to be with you.
Meryl Comer (01:26):
For those who didn't know John, describe him at the top of his professional career.
Leigh Callahan (01:32):
First and foremost, he always viewed himself as a clinician and a physician, and he really cared a lot for his patients with arthritis and rheumatic diseases. He was also a bench researcher for many years and then switched some of his focus to think about patients with fibromyalgia and chronic pain. He founded the Thurston Arthritis Research Center at the University of North Carolina in Chapel Hill and led that and also led the program, the Fellows training program for many years as well as he was the chief of the division of rheumatology, allergy and immunology. He retired from the University of North Carolina and then became, in his words, a country doc and he had a private practice in Boone, North Carolina and really enjoyed that practicing full-time until it really became too difficult with his Alzheimer's disease.
Meryl Comer (02:30):
Leigh, what were John's hobbies and what personal memories do you have of fun times together
Leigh Callahan (02:36):
In terms of his hobbies? He was an avid scuba diver, actually de cave diving and was proud to say he had a faculty appointment in the Department of Exercise and Sports science taught the undergrad students scuba diving for many years. He liked to ride off-road motorcycles and he and I enjoyed snow skiing. He taught me to scuba dive, so we enjoyed scuba diving, snow skiing, playing golf. We were both golfers and bicycling. We bicycled a lot through Europe and had a great ride for a number of years before he was diagnosed.
Meryl Comer (03:13):
Lee, what were the symptoms that initially sounded the alarm for you and was John self-aware that something was wrong?
Leigh Callahan (03:21):
I think about this a lot, Meryl, because I now see that things that almost were hurtful to me early on, which were more agitation or irritation and frustration started earliest. It was not the memory or not forgetting things, but he could not do certain activities. For instance, hanging a picture. I can remember it, taking him hours to measure and try to hang this picture and I'm saying, look, just measure from here. This is the way it will go. And he was furious with me and now I realize those were signs of his Alzheimer's disease, but they weren't the typical things that people think about. And I didn't pick up on it for a while.
Meryl Comer (04:11):
Lee, my husband, like your husband was misdiagnosed four times over five years, but my husband remained in denial.
Leigh Callahan (04:20):
What
Meryl Comer (04:20):
Was your experience and was John accepting of the diagnosis?
Leigh Callahan (04:25):
No, not initially. He knew something was going wrong. He knew he was having difficulty remembering information about his patients, and he actually commented on one of the forms we participated in that he had a patient look at her husband and say, he doesn't know who I am. That was really what precipitated him stopping work. And we went to a neurologist at that point and the neurologist diagnosed mild cognitive impairment. A few months later we went back and the neurologist, he tested as if these things are that accurate. I mean, as a researcher, I know there's a margin of error, but he was now testing in what would be classified as Alzheimer's disease and John was furious. We never went back to that physician again and he thought the physician was wrong and that maybe the physician had talked to me behind my back and did I know this? So we went somewhere else and multiple places and then it took a little while, but then a switch flipped and he was willing to accept it and I was quite happy that he was willing to talk about it and I think things became a lot easier for him and for me once he accepted it. You
Meryl Comer (05:45):
Know, our first instincts as spouses are to run interference and try to keep things as normal as possible. What were your strategies?
Leigh Callahan (05:54):
One of my strategies was keeping contact and interactions with our friends. We're very fortunate to have a wonderful group of friends that we had traveled with. We continued traveling with them, we continued going to activities that we enjoyed, basketball games, football games, going to concerts, more and more music became the type of cultural activity we would do together. It became harder to go to plays and even harder to go to movies and have him follow the plot line and not, you know, question me the whole time during it. But music opera, that was always a strategy and something we could do that was fun and he enjoyed.
Meryl Comer (06:39):
Did you find this one of the more challenging stages of the disease when you wanted to respect John's autonomy and yet you're trying to protect him at the same time?
Leigh Callahan (06:50):
Yes, I found it very challenging and challenging to figure out the line that I would go to. Very good example is I needed to be at a meeting for the American College of Rheumatology in San Francisco and John did not want to come fly out there with me and I felt like we should fly together, but he wanted to stay and go to a football game and come the day later. So I said okay, and tried to kind of help organize things about the flight. I got up in the middle of the night to call him, to wake him up to catch his flight. Well, he missed the flight and actually walked out on the tarmac at the airport and got arrested and an $11,000 fine. And I kept thinking, why did I let him say it was okay to go by himself? But it was that balance of not wanting to, in his words, baby him, but also not wanting a disaster to happen.
Meryl Comer (07:54):
Thank you Lee. These are very important antidotes to share because I think it gives people insight into some of the issues that that are going on.
Leigh Callahan (08:03):
Why
Meryl Comer (08:03):
Do you think it's important to look at the needs and priorities of both the patient and the caregivers?
Leigh Callahan (08:10):
I think it's important to look at the needs of both of the individuals because the caregiver is the person who's providing the dignity and the support for the person with Alzheimer's. And the caregiver or care partner
Meryl Comer (08:25):
Has to
Leigh Callahan (08:26):
Have support and guidance when they have to say, no, you're not going to be able to do this because they're going to be the person dealing with either the anger and the rage of why are you stopping me? You know, what gives you the authority or you don't know. But they're also going to be the person, you know, if somebody continues to drive and they have an accident, dealing with the guilt of why did I let this person continue to drive? You're
Meryl Comer (08:55):
Bringing up some so many important points. We have both managed issues of agitation in Alzheimer's. Can you share what set John off?
Leigh Callahan (09:07):
He was more agitated earlier in the disease and I think it was frustration and he was frustrated, anger at himself for not being able to do things the way he used to do them. And then that triggered frustration and anger toward me as the disease progressed and he accepted what was going on and he would say, well, you know, I have Alzheimer's. And we had caregivers he enjoyed, he wasn't as agitated. He did get agitated. I do remember coming home from work one day and he had had a fall and he needed to be walking with the walker and the caregiver and John were like face-to-face in a standoff. She was like, Nope, you're not going anywhere without this walker. And he was like, you're not telling me what to do. But it wasn't a rage, it was more of trying to hold onto control
Meryl Comer (10:05):
As the disease progressed, how did the behavioral symptoms of agitation present themselves and did the agitation ever elevate to a level where you feared for your safety?
Leigh Callahan (10:17):
Only once. And I am still not sure what triggered that, but one time it was like he just lost it and I was fearful because he was pulling over some furniture and doing things like that at the very, very end, at the end stage, he was having hallucinations and I wasn't fearful then. I was more just profoundly sad. He was frightened at that point, at the, toward the last week or two.
Meryl Comer (10:53):
Can you offer other caregivers any strategies on how you've dealt with these episodes?
Leigh Callahan (10:59):
With the hallucinations? I, I tried not to totally disregard what he was saying. I was, you know, I said, I, I understand you're seeing something. I'm not seeing that, but you, you know, I tried to value that and not just argue away. By that point though, I had to hospitalize him. He was hospitalized and that was, that was extremely tough because hospitals make everything worse. I, at the time that they started thought that he must be having a urinary tract infection. I mean, because it happened pretty quickly. And so we were in the emergency room and trying to figure things out and then they had to restrain him and he was very upset and frightened and unhappy with me. And he would call me over and say, if you just got to bring me a knife, you've got to get a knife in here. And I would say, well honey, you know, the hospital won't allow that. They would stop me. I, you know, I would try to help you if I could. I tried to, you know, not say like, this is ridiculous. I can't bring you a knife, but I would just try to couch it in a way that I'm not going to be allowed to do this because the hospital has rules.
Meryl Comer (12:12):
I use the similar technique in playing into the hallucination, not challenging it. And I would try to solve the issue to the point of capturing things in pillow cases, do anything to resolve it and put it outside and slam the door and say, we're clear.
Leigh Callahan (12:32):
I think back now, I haven't thought about some of these things for a little bit and thinking about how I was in the emergency room when he was saying, don't you see that bear climbing over the edge of the ship behind you? And I,
Meryl Comer (12:45):
I would say I'd look and I'd say, oh,
Leigh Callahan (12:47):
It must have gone down. I'm not seeing the bear.
Meryl Comer (12:50):
Lee, we both testified at an f d a public hearing considering a new and first treatment for agitation in Alzheimer's disease. Why is it important to speak out at these public hearings and how much, if at all, do you think we influence the outcome?
Leigh Callahan (13:07):
That's a double barrel question. I will go first with why is it important? I think it is important for us to get the story out there about what really happens to the dyads of Alzheimer's disease, whether or not you are a spouse, a child caring for a parent or a good friend, sibling, whatever. There's a lot that goes into the relationship of who becomes a primary care partner and what they see and deal with and protect and do to provide dignity for their loved one. And many times that story is not there. And say the agitation, someone on the outside who has not lived it, not breathed it, has not experienced it, may have no idea the fear, it can strike in the person who is dealing with it and the hopelessness that someone may have about how do I deal with this, what do I do? And the profound sadness that someone has, that you love someone and you're looking at someone who obviously is in a lot of pain. And I think making that abstract vision that someone who's not been part of it a reality is important and we should all do that.
Meryl Comer (14:39):
Nellie, let's go back to that second part of the question, which is how much, if at all, and you're a scientist yourself, do you think we influence the outcome
Leigh Callahan (14:49):
Very little, sadly. I find it interesting that there's still rightfully so a focus on what does the patient think or the person with the disease, the person with the disease feel. And this disease doesn't happen in a vacuum, and I don't feel like that the voice of the care partner has been valued as much in the past.
Meryl Comer (15:15):
In our next episode of Brainstorm researcher and caregiver, Lee Callahan shares why she and her husband John chose to be patient advocates, what she wished doctors had told her, and how the Alzheimer's journey changed her. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now we'd like to hear what's on your mind, what are the topics and guests you'd like to hear featured on brainstorm? Send your comments to BrainStorm@usagainstalzheimers.org That's it for this edition, I'm Meryl Comer. Thank you for brainstorming with us.
Speaker 2 (16:13):
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