‘If I Don’t Forget:’ Leah Fisher on Living With Uncertainty After an MCI Diagnosis

Before an Alzheimer’s or another dementia diagnosis, many patients get a diagnosis of Mild Cognitive Impairment (MCI). As Marwan Sabbagh explained in a recent live talk, “MCI is cognitive impairment without functional impairment, still independent, but still having some cognitive issues. Dementia is a category of definition of cognitive impairment with functional impairment. We want to capture people in the MCI phase.” Yet, for some patients, getting an MCI diagnosis when they start to notice signs can be difficult. 

When Leah Fisher noticed she was starting to drop essential items like passports, leave things behind, and make other mistakes, her doctor told her that she was functioning better than other adults her age. Four years later, after being unable to get an assessment for two years due to the COVID-19 pandemic, Fisher received a diagnosis of MCI. 

Now based near Berkeley, California, Fisher is a self-proclaimed “wild and crazy grandma” to four young grandchildren. In a previous chapter, she worked for 35 years as a psychotherapist, marital counselor, and corporate consultant. During that time, she brought her expertise to television programs, including The Oprah Winfrey Show and 60 Minutes, and media outlets, including Newsweek and The Wall Street Journal, in their “Work and Family” column. To spread humor and awareness, she’s co-written the song “If I Don’t Forget” with Laura Fannon about living with MCI. 

Fisher joins Being Patient Live Talks to discuss her experience with the early signs of MCI, seeking a diagnosis, and learning to live with uncertainty. 

Being Patient: What were some early signs, pre-diagnosis, that maybe your memory or cognition wasn’t what it used to be?

Leah Fisher: Looking back, I would say there were whispers of it right after menopause. I remember a mess on the counter when I poured coffee into a full cup of coffee. So, there were little signs. I would say about seven years ago, I became concerned— a lot of flakiness. I’m somebody who hangs on to my stuff and is fastidious about keeping appointments. I left a sweater at a concert. I swam in a lake and left my wet bathing suit behind a tree. On an international flight, the flight attendant held up a passport and said someone dropped their passport in the aisle, and I didn’t have to look to know it was going to be mine. So, those were some of the early signs.

Being Patient: We’ve all had those moments of forgetfulness. Is it because, for you, that was uncharacteristic, why it occurred to you that maybe something was wrong?

Fisher: Uncharacteristic, and they happen more often. That’s one of the tricky things about MCI. It looks a lot like what somebody referred to as CRS syndrome, which is “can’t remember sh*t.” So, if you are somebody who likes to dismiss things, it’s easy to dismiss. Friends will say, “Oh my god, I do the same thing.” It’s quantity, and it’s how out of character it is for how you usually are. Those were the things that signaled it.

Being Patient: One of my pet peeves in the industry is that many women are told, “Oh, it’s just menopause.” We know fluctuations of hormones can impact memory and cognition, and that’s why the attribution to menopause seems logical. But from my perspective, I continue to find it strange that for women who are told “it’s just menopause,” it takes them saying “No, it’s not,” or seeking two or three opinions before they get to the heart of the issue. Talk to me a little bit about that because it sounds like your cognitive problems were coming at a time when you were menopausal. Did you attribute it to menopause? How did you know to look beyond that?

Fisher: I have this expression that has served me well, and it is “I know what I know.” I didn’t know [if it was] menopause. I didn’t know what’s normal. What’s abnormal, it was certainly abnormal for me. But it was abnormal for a lot of people. It was about seven years ago that it began to hit critical mass.

“I have this expression that has served
me well, and it is ‘I know what I know.'”

I went and got an evaluation and was told that I was functioning way better than people my age and that the only sign was that I thought something was amiss. I left thinking, glad to know I’m functioning better, but I know what I know. 

Being Patient: For you, you were not at optimal functioning.

Fisher: No, I’m saying to myself, it was off. Not hugely off, but off. A year later, I went back, and I was told I was functioning way better than people my age, and the only sign was that I thought something was amiss, and I know what I know.

Being Patient: So, a year went by when you were like, I’m not sure if something’s wrong, and they’re like, “No, you’re functioning fine.” Then you come back a year later, and they say, “Wow, you’re functioning way above what people your age are, so you’re fine.” Then what?

Fisher: Then came COVID, so I didn’t get checked out for those two years. Then, things started to change that I could not attribute to CRS syndrome. I was typing, and I couldn’t remember what the “L” key was. I was working on my income tax, and I was trying to multiply four by seven, and I couldn’t remember. That’s what, second grade, third grade? Then I went to type “maybe,” and I spelled it wrong. It didn’t look right. And I tried again, and that didn’t look right. It took five tries to get “maybe.” At that point, it’s like, I don’t care what the tests say; something’s really wrong, and that’s when I got the MCI diagnosis.

Being Patient: What did it take to get that diagnosis? You’re performing over people your age on these cognitive assessments, which are not one-size-fits-all. That’s why it’s so important to have a baseline to compare it. When you get that diagnosis, is it four years since that first appointment?

Fisher: Yes, it’s about four years later. I went back to the same institution. I had gone because I wanted a baseline, and it wasn’t difficult. My initial doctor had moved out of the country. There was a new doctor. But getting the test was very straightforward. The testers, I have always found [them] to be charming and responsive and just nice people. That in itself was not upsetting. I just find that temperamentally, there are people who are really curious, and they want to know. There are people who will wait and to find out on an as-needed basis, and then there are people who work hard to not know what other people see and know. I’m one of the curious ones, so I wanted to know.

Being Patient: Did they give you the same cognitive assessments? Did you score lower this time?

Fisher: Definitely. 

Being Patient: So, they could see, after two rounds of testing, that now something was showing up on these tests.

Fisher: And probably, it had been progressing during the two years that I didn’t visit.

Being Patient: You get a diagnosis of mild cognitive impairment, MCI, which is typical of anyone beginning this journey. Then, what did you do next?

Fisher: Well, just in terms of responding to that diagnosis, mostly, my first reaction was relief. Oh, good. The outside world has met my inside world, and there was something very reassuring about that. 

Being Patient: That’s really interesting. Is it because, in some ways, maybe you thought you were kind of going crazy thinking something was wrong, but it wasn’t validated?

Fisher: Because I knew what I knew. Your instincts, when you feel seen when somebody says, yeah, that the tests are matching, what you believe is going on, and then there was also about, “Oh, my God, this is real, this is true, what does MCI mean?”

Being Patient: What were you told what MCI means by your doctor?

Fisher: What I was told was that it put me at much higher risk of developing Alzheimer’s in the future. I read up about it as well, and it was clear I was at much higher risk. At that point, it was vague. That doctor also said that, if I wanted to, there was a clinical trial that would let me have a PET scan, and the PET scan would indicate if there was amyloid anywhere in my brain.

“The outside world has met my inside
world, and there was something
very reassuring about that.”

So I said, “Sure, okay,” and then I was terrified. I mean, waking up in the night shaking, terrified. My wise daughter said to me, “Just because something’s available doesn’t mean you have to do it.” So, I called and I canceled the appointment, and the shaking stopped instantly

Being Patient: So, it was the anxiety that a biomarker could exist in your brain. Is that why you were very anxious?

Fisher: I mean, looking at my face is one thing; looking inside my brain is another. Six months later, the same doctor made the same offer, and by then, I felt good. “Yeah, I’ll go for it,” and they found amyloid in every lobe of my brain. 

Being Patient: At that point, do they change the diagnosis? Or is it still considered MCI?

Fisher: They didn’t change the diagnosis. I did. Even though they said, you’re at very high risk. I told my daughter and my husband that I had Alzheimer’s disease and believed it. Needless to say, they cried. I had to think, who will I tell? Who won’t I tell? Which I think it’s just a huge issue for anybody, either with MCI or the next diagnosis, and I blurred those two. I just slid from understanding MCI to if there’s all this in my brain. I clearly have made the slide into Alzheimer’s disease.

Being Patient: What happened next? Did you participate in the clinical trial?

Fisher: The trial was how do doctors do any better job of working with patients if they know about that amyloid. So, it was actually a study for the neurologists, and they use people like me to give them the material. Now the doctor has the diagnosis involving amyloid; what did they do the same or differently?

Being Patient: Did you feel you got the correct type of information participating in that trial? How did your doctor communicate about the amyloid, and was there the option not to find out?

Fisher: I wanted to know, or I wouldn’t have done it. The doctor put the pictures of my brain up on the screen and showed me all the amyloid, and I heard “blah, blah, blah, blah.” It was that that made me make that slide. I was that person for a little while, and I shared that. The issue for me was who to tell and who not to tell. I think that’s a big issue for people.

Being Patient: Is that because of the stigma associated with MCI and Alzheimer’s disease?

Fisher: Stigma kind of is a word. It was really, who’s gonna step closer to me and who’s going to step back? Who’s going to see me as the same me I’ve always been, and who is going to, on some level, write me off? Once you’ve told someone, you can’t untell them. What if I call that wrong? I didn’t want to be treated like an “it.” 

Being Patient: I’m so glad that you’re saying that because I think that’s a big piece of this for a lot of people with diagnosis is like, “Don’t treat me differently. I’m still me.” If you think about it, if somebody breaks their arm or something, we’ll acknowledge it and say, “Oh, I’m so sorry you got injured,” but then we move on. We don’t dwell on the fact that a person has a broken arm, but I could understand why with the brain. The worst part is probably because you feel that you’re experiencing something, but you’re still you, right?

Fisher: Oh, totally. The good parts work just as well as they always did.

Being Patient: What did you do before? You’re obviously a highly intelligent person. Tell me a little bit about what your life was like before this diagnosis.

Fisher: Sure, I was a psychotherapist.

Being Patient: You’re also very aware of your inner feelings, right?

Fisher: Yes, but I came that way from the factory, that being very attuned. At the time of that diagnosis, I was in the middle of writing a book, which I just finished. But knowing where the “L” keys on a keyboard are and knowing how to spell “maybe” is really relevant to creating a book. 

I’d love to tell a very sweet story about letting people know. I have a group of people, couples that we’ve been camping with for 38 years, and I decided to let them know this summer. I said I wanted to do a senior wisdom circle and would they put their camping chairs in a circle. I told them about my diagnosis and said, “It looks like I may be the first one in this group to develop dementia.”

“Who’s going to see me as the same
me I’ve always been, and who is going to,
on some level, write me off?”

What they did was just remarkable. I knew they were people who would step forward. One by one, they came over and gave me a hug, no talking. Then, one by one, they went to my husband, and they gave him a hug, which I just found very moving. We sat down, and they asked the most wonderful questions I’ve ever been asked. He asked, “How is this affecting your marriage?”

And I said it’s brought us closer than ever. It’s a now or never moment, and both my husband and I chose now. We’re much closer. And then they asked, “What do you need from us?” I said to keep on loving me, whatever happens, and to try really hard not to change how you relate to me. They asked me one more question, which I can’t remember.

Being Patient: I’ve interviewed hundreds of people, and one of the main constants I find is that people with a diagnosis do much better when they have a supportive partner. I love that gesture of hugging your husband, too. It feels like that one constant is a supportive partner, and it doesn’t necessarily have to be a spouse. It could be someone else, but a constant source of support and love makes it feel like the decline is less if you have that.

Fisher: Interesting. I think the best coping skill for this time, especially with MCI, is learning how to be calm in the face of uncertainty. There’s so much not knowing with MCI. Is it going to stay stable, and is it not going to be a problem? Am I so old, but I’m going to die from something else, and [is it] not going to be a problem? Will it progress quite slowly? Which has been the case for me, thank goodness, so slowly that I can be thinking ahead, preparing even being kind of funny about it. Or is it going to slide fast into a diagnosis none of us would like to have?

“I’m getting to turn what’s happening
to me into a gift by letting
other people know about it.”

Being Patient: You co-wrote the song “If I Don’t Forget” with Laura Fannon. Let’s talk a little bit about this. How did it even occur to you to write this? Were you a songwriter before?

Fisher: Absolutely not. I am in an Alzheimer’s support group and early diagnosis support group through the Alzheimer’s Association. During our meetings, this phrase kept coming up, which is, “I will love you always if I don’t forget.” It kept coming up and coming up. This was about finding the humor in this very unfunny situation. 

So, I knew the singer-songwriter, and I asked her if she would help me make a song about MCI and living with uncertainty. You didn’t play the chorus, but the chorus is really the funniest part. It was finding creativity in the midst of uncertainty. To me, that’s been the coping strategy, and a silver lining of a horrible diagnosis is a hard thing to believe, but there have been some very delicious things that have happened. Because of this, and my writing a song, having never written a song, is one of them. Getting closer to my husband, after all these years, and doing things like this, speaking with you is probably the most important one— that I’m getting to turn what’s happening to me into a gift by letting other people know about it. 

Being Patient: What would you say to people just entering this journey? What is your advice to them?

Fisher: Personally, what I would say to someone with [a] fresh diagnosis is, “How can I be of help to you?” So, that would be where I’d start. The other thing, I would say, somewhere along the line, is learning to not catastrophize where it’s going and to not pretend nothing is happening. To be able to hold both possibilities at the same time is a coping strategy, a spiritual practice, and will make you a bit more tranquil as you live with the not knowing

Being Patient: We have a question about the book you mentioned writing. What are you writing?

Fisher: I’m writing a memoir that is a travel memoir and a marriage memoir. Fifteen years ago, I really wanted to travel the world. My husband wanted to work. After a very thoughtful negotiation, we agreed that I would travel the world on my own for a year, and he would stay home and work. It’s about a year’s worth of wonderful adventures, what would happen, what would come to me, and its impact on our marriage— which was pretty delicious. We realized we were together because we wanted to be and not because we couldn’t get along without each other. We ended a lot closer than before.

So, here I am with MCI, and the two of us [are now] in our 70s, and we’re growing. We’re growing. We’re maturing as married couples, individually, but especially in our relationship, we’re less afraid to open our hearts wide. 

Katy Koop is a writer and theater artist based in Raleigh, NC.