Diagnosed in 2024, Portland resident Christy Scattarella has been using her own journey with Alzheimer’s to uplift others and erase stigma surrounding the disease.
She champions her “Optimist’s Guide to Alzheimer’s” as a way to combat the fear and shame those with Alzheimer’s commonly face.
Scattarella joins us to talk more about her work.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. We end today with Christy Scattarella. She spent years as a journalist, writing about child abuse and systemic shortcomings that put children at risk. She went on to start a foundation to help students with learning disabilities succeed in school. Then last year, Christie was diagnosed with Alzheimer’s disease. Her first reaction was grief and rage. But eventually she began speaking out about the disease, and she now champions her “Optimist’s Guide to Alzheimer’s” as a way to combat the fear and shame that often comes with a diagnosis.
Christy Scattarella, welcome back to the show. It’s great to have you back on the show.
Christy Scattarella: Thank you. It’s great to be here.
Miller: How are you doing today?
Scattarella: I feel fabulous.
Miller: Does it change day to day? Do you have better days and worse days?
Scattarella: Oh yeah, I definitely have days where it’s noon and I’m still in my bathrobe because I’m just so bogged down and it’s nothing I can really control. But I try to wake up every morning, happy, grateful and joyful and ready to take on the day. But I can’t do it 100% of the time.
Miller: How much personal experience did you have with either Alzheimer’s specifically or dementia more broadly before you were diagnosed yourself?
Scattarella: I’ve been dealing with it for decades. Dementia took my father, my oldest sister, and along with cancer, it took my mother. And then when I got my diagnosis, I was just shocked and I cried. I screamed myself hoarse and I mourned a future I could never have.
Miller: How much of that response was, do you think, specifically tied to what you’d seen in your parents and your sister? I imagine everybody who gets that diagnosis deals with intense negative emotions. But do you think it was worse because of what you’d already seen in your own family members?
Scattarella: Yes, absolutely. I think, particularly with my dad. I was very close to him, but he’s been a great teacher for me.
Miller: In what way?
Scattarella: Well, Dad was someone who always just cut a dashing figure. In fact, I had a childhood friend who would often say, “your dad reminds me of James Bond.” But over time, Dad began to change. A little at first and then more dramatically as if pieces of him were disappearing. And then one day he confided to me, “Christy, don’t tell Mom, but I’m falling asleep at red lights.” I’m like, “Oh, Dad, I’m so sorry. That must be so terrifying for you.” And a little later I said, “By the way, my car’s in the shop. Mind if I borrow yours?” He didn’t notice that I never brought it back. And so my brilliant, debonair dad, who was always the most dynamic person in the room, had Alzheimer’s.
Miller: When you chose that sort of savvy way to take the car away from him, I’m curious, why you did it in that way? It seems like it was effective, but what made you choose that way?
Scattarella: It maintained his dignity.
Miller: That was a very conscious choice on your part?
Scattarella:Oh yeah, he was doing me a favor. He was helping his daughter. But the big thing with my dad, the amazing thing was … I also had a middle sister named Debbie. In her late 30s she developed diabetes and the treatment was so hard on her that she had heart attack after heart attack, to the point where the paramedics rushing through the front door would greet Susan, the family cat, by name.
But here’s the thing, as Debbie declined, Dad rallied. Now, don’t get me wrong. There were many things that Dad could no longer do. But somehow this 81-year-old man, already far along on his Alzheimer’s journey, found a way to do what mattered most to him, and that was to take care of Debbie. Having purpose had given him meaning and vitality. And Debbie, she just basked in all of Dad’s love and attention. And after she died, Dad would often say to me, “Christy , I’ve lost my job.”
Miller: And he meant caregiving?
Scattarella: Yeah, that’s what he was saying. He called it his job. That’s what he lived for, to take care of Debbie. And he didn’t have that anymore and he faded quickly.
Miller: You’ve talked about this. In the context of the importance of finding purpose at every point in our life, including in your case, after you were diagnosed with Alzheimer’s, what is your purpose now?
Scattarella: My purpose, from everything I’ve done, was always that I took advantage of what was right in front of me. And I feel like I’m living my purpose now, just even being on the show, and being able to share with people that life doesn’t end with an Alzheimer’s diagnosis. You can have a fabulous life for a very long time or maybe a shorter time, we really don’t know.
But the fact is, life isn’t forever and there’s so much that we can do and offer and change. And that’s, for me, everything I’ve done. It’s always been focused on we can do better than this. These people, whoever they are, whatever population is being stigmatized, misunderstood or ostracized, we can do better for this. We can do better for them.
Miller: You’ve said that for the first two months after you got your diagnosis, you didn’t even tell your husband?
Scattarella: I know.
Miller: What was it like to keep that secret?
Scattarella: It was horrible cause, oh, I had just grieved, I had cried, I’d screamed and I thought about my future I couldn’t have. But then I just couldn’t bear to tell him. I didn’t want to. I didn’t want to upset him. Of course, he already knew something was going on. But feeling like something inside me that was that horrible, I couldn’t bear that. And it got really exhausting. And I realized I did not want to spend the rest of my life incubating a monster.
So, one morning I was looking outside the window and there was a baby deer eating grass in the backyard. And I don’t know, there was just something about that peaceful moment that led me to think, huh, is it possible there’s something good that could come from this miserable diagnosis? OK, my first thought was, now I’ve got an excuse for everything. But I wanted something more, and eventually I found it, and that was a way to have Alzheimer’s without it having me.
Miller: How have you reckoned with various fears – fears of loss, of change, of diminishment, of the unknown?
Scattarella: Mostly, I will acknowledge them for a short time, but you can’t live there. If you think that having an Alzheimer’s diagnosis is the worst thing that can possibly ever happen to you and you live with that every day, you get to be right. If I think that my life is wonderful and joyful, and quite frankly, these days I enjoy life more.
Miller: More than you did before your diagnosis?
Scattarella: Absolutely.
Miller: Can you explain that for us?
Scattarella: Sure. I’ll share the biggest thing was realizing I would not go back to the person I was before Alzheimer’s. Because I had been a textbook workaholic for decades. I’m not anymore. I make time for friends and family, and I reach out to others instead of waiting for them to reach out to me. I’ve even found a kind of radical peace. It’s the difference between hopping about and screeching in an icy, cold shower and calmly allowing that cold water to flow over me.
I’m so grateful. My husband and son, I’ve always been very close to both of them. But now, I just can’t even tell you how loved and supported I feel.
Miller: If I could go back to the cold water thing … It’s a very evocative way to think about this because, as you were describing that, I thought maybe you were going to say the difference between shrieking in a cold shower and basking in a warm shower. But no, the water is still the same. The circumstances have not changed. It’s your response to the circumstances. And that is what has made a huge difference in the way you experience life.
Scattarella: Absolutely, absolutely. I just have a vision I lean into every day. It’s totally unrealistic, but I’m going there. So every year, my husband and I go to Cannon Beach, and we stay at the Hallmark, and we have the same room, and we call it the anniversary trip because our anniversary and my birthday are just a few days apart. And we swim. It doesn’t matter if it’s cold or rainy or hot and sunny, we go and swim in the water.
Miller: This is a real thing that two of you do every year?
Scattarella: Every year, yes.
Miller: What season is this?
Scattarella: End of September.
Miller: OK, so it could be cold.
Scattarella: It is cold. And my vision is the two of us out in that water, we’re swimming out there, then we’ve had enough and we’re kind of shivering happily. And then we come out of the water, we wrap one another in a giant beach towel and hug each other tightly, and it’s 10 years from now. If it does come true, I will let you know, I will not be in a two-piece anymore. [Laughs] I’ll be in a one-piece then. So it’s not realistic. But if I live into it, the only way it can be true or something close to it can be true is if I believe it.
Miller: What do you think that that’s given you, imagining that time stretching out 10 years from now? What does it mean to you, now, to be imagining that?
Scattarella: It gives me hope. It makes me hopeful every day. Every day, I challenge myself. I try to do things I haven’t done before or try to do them in a new way. I’m constantly doing research and letting people know you can still have a good life. One of my biggest concerns is the way people with Alzheimer’s are treated. After receiving their diagnosis, about 60% feel isolated and more than 1 in 4 lose friends because of it.
Miller: How much do you think that’s because of the person who has given the diagnosis themselves retreating, and how much is because they are, for lack of a better word, ignored or shunned by their old friends?
Scattarella: It’s probably even. It’s both. I was thinking of this retired professor who, after he told his buddies, he reported, “The dinner invitations stopped. My weekly golf games disappeared. It was as if I became invisible overnight.” And the loss of memory is devastating, but the loss of longtime friendships, that’s unbearable.
Miller: How do you guard against that? I guess it’s a complicated question because it’s a kind of a dance. It involves two different parties here. But let’s start with your own actions, what you can control. How have you managed, thought about or fostered your own friendships over the last year?
Scattarella: I’ve been very fortunate. My friends have stood by me. But I’m gonna backtrack a little bit and say, the thing is, people don’t realize that there are multiple stages of Alzheimer’s. I’m, right now, in a stage called mild Alzheimer’s, which means I can live independently. I can do a lot of things. Now, sometimes I think I’m making a phone call and I’m pressing the keys on my laptop instead. Or, I often put my underwear on sideways in the morning and don’t notice until bedtime. But, so what, you know? But I think what people have in mind is that an Alzheimer’s diagnosis means you’re just one feeble step from the grave. And nothing could be further from the truth.
There are tons of us out there. We’re working every day, we travel, we volunteer, we make dinner, wash the dog. And you know what else? Of course, we’re having sex. [Laughs] And I wanted to point that out because a study by the University of Chicago found that about half of those with dementia who are living at home are sexually active, and some are up to 91 years old. So, yay, good for them. But if we’re perceived as the human being in us is just gone, we’re just a blob, that’s awful because we can have dignity to the very end.
And I think of my friend Susan. She had a best friend named Beth and people are also really terrified of, “Oh, what am I going to say? What am I gonna do? How’s this person going to react?” But it doesn’t have to always be this horrific progression. Beth was sweet, happy and loving right until the very end. And Beth said, “I learned so much. She was my teacher. When she got sick, she became my teacher and I saw things about myself that I’d never seen before.” And it can be that way as well. And most people don’t know that.
Miller: As a former caregiver, I guess probably in some ways still a current caregiver, to your parents and your siblings – I was thinking about that in terms of the care you gave them before. – how do you think about what awaits your husband and your son?
Scattarella: Well, I do know, at one point, my darling son Alex will say to me, “Hey Mom, my car’s in the shop.” And I know he’ll do it with love. He’s very protective of me, calls almost every day and we’re closer than we ever have been.
Miller: Because of the diagnosis, you would think?
Scattarella: Yes. Even though we were close, now we’re closer. And the same with my husband. We’re just shocked at how happy and joyful we feel all the time. And I want others to have that experience too. There’s just so much we can do. It’s also important for people, I would say, to laugh – and I couldn’t do this with my parents or my sister just because of their condition. Laugh as much as you can. Laugh at yourself. The ancient philosopher Epictetus said, “He who laughs at himself will never run out of things to laugh at.” I make a million mistakes every single day, but learning to laugh at myself has taught me to accept me just as I am.
Miller: Is that a new lesson? You didn’t laugh at yourself or at mistakes in the past?
Scattarella: Not really. I was too busy being a workaholic.
Miller: Just busy striving for the next thing?
Scattarella: Striving for perfection. And strangely I never got there.
Miller: What advice do you have for family members or caregivers?
Scattarella: Oh, absolutely, the number one guidepost is jump in. Jump in even if you’re uncomfortable. Now, you may not know what to say or do but that’s all right. You’ll get there, because your companionship actually makes us stronger, it improves our quality of life and it can also slow our cognitive decline. And on top of that, it lets us know we still belong. And it’s kind of hard to say the wrong thing. Let the other person take the lead. All I would say is, don’t ever correct anybody or tell them, because you’re just making them wrong. Their reality is as real as your reality.
Miller: What’s an example of that?
Scattarella:Oh, a perfect one is … I say all these things now and it’s something I didn’t do, I have to confess. My sister had Lewy body dementia and that brought on horrifying hallucinations. Wild animals were in her room and they were intent on harming her. And for a long time, I would say, “Leslie, it’s OK. Don’t worry, there’s no wild animals here. You’re going to be fine.” But all I was doing, again, was making her wrong. So instead, I decided to visit her world and see those animals myself. So I would tell her, “I won’t let them hurt you, I’m going to hold your hand and I’m going to stay with you until they’re gone.”
Miller: Did you notice a difference? Was she more comforted when you would do that?
Scattarella:Oh my gosh, yes, because I was respecting her reality. And I just believe that Alzheimer’s isn’t all bad. It’s also a call to greater caring and compassion, and it causes us to expand our own minds if we let it.
Miller: How much do you let yourself think about the possibility that, at some point in the future, you wouldn’t be able to have the kind of conversation that you and I are having right now, you wouldn’t be able to have all of this in your memory necessarily or speak with such eloquence, that one of the real powers you have, your language, could be diminished significantly? Is that something that you let yourself think about?
Scattarella:I make short visits there, but I don’t book a room. I don’t think it does me any good. And the more I can fill myself with those good hormones, and experience joy, and fulfill what now is my life’s work of making sure other people can feel this way too, and that those who are shying away from those with Alzheimer’s, instead of pulling away, what if they leaned in? Because what I want you to know is that no matter where we are in the journey – beginning, middle or end – we all are still worthy of your time, attention and respect. And you know what? We can continue to enrich your lives too.
Miller: What gives you joy these days?
Scattarella:Making dinner for my husband, because I can still do it. OK, sometimes a lot of it winds up on the floor and it takes twice as long. Everything I do takes twice as long. Traveling. Pretty soon we’re fulfilling our lifelong dream. We’re bound for Egypt after TEDx. And I’m just spending more time with my son and knowing that I have a way to change other people’s lives, in an even bigger way than I have in the past.
Miller: Christy, it was a real pleasure spending time with you. Thank you very much.
Scattarella: Thank you.
Miller: Christy Scattarella was diagnosed with Alzheimer’s disease last year. She now speaks about her “Optimist’s Guide” to the disease.
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