[music]

Brian Lehrer: Brian Lehrer on WNYC. Now, we talked about how nursing homes have been impacted by the pandemic, but what about family members with Alzheimer's or dementia, no matter where they lived. Last Friday on Ask The Mayor, we got a call from Santos in Park Slope. Take a listen.

Santos: My wife has dementia and she would be going to a senior, it's not only seniors, but it's a day program for people with dementia, et cetera, as it's called the New York Memory Center. It's on 14th and 4th. Anyway, they've been closed down, I guess, since the beginning of the pandemic when we had the whole close down and they're basically hanging on by their fingernails. This is the only chance for my wife to have any socialization and like her, there are many. I'm wondering this is not a medical unit. This is a socialization unit. I was wondering when these programs will be opened up.

Brian: Santos in Brooklyn calling the mayor on the show last Friday. Unfortunately, as with many other lifelines, many options for socialization have been shuttered and for those with Alzheimer's or dementia in nursing homes, one-on-one time with loved ones has often been virtual. Now we'll open up the phones for anyone who is taking care of someone with Alzheimer's or dementia. How have things been since March? What tough decisions did you have to make in order to care for your loved one with the disease? Is there anything that has worked or helped that other listeners might learn from? Give us a call; 646-435-7280. 646-435-7280.

Joining me now to talk about her experience of taking care of her mother who has Alzheimer's and how the COVID-19 pandemic has made things harder but what best practices you can learn from to help your loved ones is Yvonne Latty, professor at NYU's Carter Journalism Institute, where she heads a graduate multimedia reporting program. Her recent piece for NPR is about what it's like to lose her mother to Alzheimer's during COVID. Professor Latty, welcome back to WNYC, and let me say first, I'm so sorry for your loss.

Yvonne Latty: Actually, she's still alive, but I guess it does feel like a loss-

Brian: Oh, I'm sorry.

Yvonne: -because since COVID-19, she has severely declined. She's in hospice now.

Brian: I'm sorry for having actually over-interpreted what those lines meant, but for our listeners, you recently produced an audio story on the experience of caring for your mother who was first diagnosed with Alzheimer's. I see four years ago. What changed as a result of COVID?

Yvonne: Basically, you can't visit nursing homes and my mom's in a nursing home in The Bronx, and not only could I not visit her, but the music group and the art group and she had some friends, all of that was put to a halt. My mother was spending most of her time in the room alone, or she would be wheeled out to the hallway where she could look at her friends, but she couldn't really talk to them. My only connection to her at this point became Skype calls and FaceTime calls. My mother became more and more unresponsive, stopped recognizing me. There was nothing that I could do because COVID was raging in the nursing home, in the city and there just was no visitations. Was really, really hard. Really hard.

Brian: In your piece, which I should say is for Latino USA, you say, "Alzheimer's disease has been hell and COVID-19 has made it worse. The last time I saw her in person was March. She knew who I was then." Have you been connecting with your mother during this time and to what extent is it possible and has it become more possible as the pandemic has eased at least, temporarily or we hope permanently in our area and the restrictions for visitation maybe aren't what they were?

Yvonne: I was doing weekly Skype calls and then I switched it to every other week because the call seemed to annoy her because she had absolutely no idea why this lady was calling her and who she was, which was her daughter. Like she had no idea who I was and I tried playing music. I had my daughters with me. I showed her photos, but nothing. Every week it was getting worse and worse and worse.

Recently, the restrictions were lifted where they were allowing visitors, but it only lasted a couple of days because then someone else, either a staff or a staff member or a patient became infected. Then they had to cut off visits and the way to visit is you have to show them a negative test. In New York, it's just really hard to get a COVID test and a result in 10 minutes and then let to the nursing home because you also have to make an appointment. What happened with my mom was she just declined so much that she became eligible for hospice.

Brian: Did we lose you? Is professor Latty there? I'll tell you what, we have to take a break anyway. We're going to do that. We have people calling in and we'll get to the best practices for managing your loved one with dementia or Alzheimer's with Professor Yvonne Latty from NYU's journalism school and your call, 646-435-7280, right after this.

[music]

Brian Lehrer on WNYC and we have reconnected with Professor Yvonne Latty who teaches journalism at NYU about caring for people with dementia and Alzheimer's during the pandemic. Professor, I want to put a caller on with you. Our lines are full and I want to get a few callers in here in our available time. Tom in The Bronx. You're on WNYC. Thank you for calling in.

Tom: Thank you, Brian. I'm very glad to have this opportunity just to mention that I am my mother's sole caregiver. She is 100. She has late-stage dementia and the pandemic has basically forced me to self isolate with her since the mid-March. I used to be able to take her outside the apartment complex here in Riverdale just get some fresh air and be able to get her a change of scenery.

Now, since I can't do that anymore, I just noticed that my mother's dementia has progressively increased and it's not just her old age, but she keeps telling me she would like to go outside. I keep reminding her, "Well, it's really too risky for that. We've got to go in the elevator. There's some airborne viral particles possibly in there, and I can't risk getting you infected."

Brian: What are the best practices that you have been able to follow? At the, I guess, it's a senior residence in Riverdale that you're referring to.

Tom: No, no, no.

Brian: What do they allow or what do they recommend? Go ahead.

Tom: This is her apartment.

Brian: It's just an apartment building.

Tom: Yes. I'm living with her looking after her.

Brian: I see.

Tom: I just wanted to say that this pandemic has meant that she's had to sharply curtail whatever little enjoyment she had in her life. It's very difficult on her, not to mention me as well.

Brian: I understand. Tom, thank you very much. Sherry in East Hanover, New Jersey. You're on WNYC. Hi, Sherry. Thank you for calling in.

Sherry: Hi. I just wanted to say that I am so fortunate that I've had the exact opposite experience. My mother who has Alzheimer's lived in a nursing home. She had COVID, she almost died. She received excellent, excellent care. Somehow she has come back and she's fine. We're one of the happy stories. The only thing that is different and which is difficult for her is they have not really resumed activities to any degree because of the restrictions or the communal dining. They have instituted excellent system of FaceTiming with family members. You can do it every day, pretty much. My sister and I, actually, take turns and I'd like to give a shout-out to the Jewish Senior Services in Bridgeport, Connecticut because they've just done an amazing job.

Brian: Sherry, thank you very much. At least there's that FaceTime as a practice that we heard from the previous caller, how that connection can be frustrating, especially for someone with advanced enough dementia that they don't really know who they're talking to. Professor Latty, I want to point out to the listeners that as you describe in your piece for Latino USA, your mother is from the Dominican Republic. You identify as Afro-Latina and there's a racial disparity when it comes to Alzheimer's. You report African-Americans are twice as likely to develop Alzheimer's than white Americans and Latinx Americans are one-and-a-half times as likely. Can you talk a bit about the disproportionate impact that this disease has on communities of color?

Yvonne: Yes. It's like with everything involving race, unfortunately, in the United States. It oftentimes feels like people of color get the short end of the [unintelligible 00:11:08]. That's also true in health care. The things that I witnessed my mother going through was really shocking to me. When she was diagnosed, the neurologist told us to Google it. The waiting rooms we waited in were all filled with Black and brown people. There wasn't even enough seats for us to all sit down comfortably.

It was really rough and it was really eye-opening to me because my mom has a really traditional immigration story where she put a lot in me and my sister who passed away in our education and dreaming big for us, but I had no idea what her world look like through health care and the disease is disproportionately affecting people of color. I'm not saying that it's not affecting white people because this is a disease that really does not discriminate and it's horrible for anybody who's involved in it. There's many factors, from high blood pressure to diabetes, health care issues that lead to this disproportionate impact on people of color.

It's just absolutely sad to see because oftentimes people of color just don't have access to the best nursing homes. They're on Medicaid and Medicare and oftentimes their family members have to be the primary caregivers during the illness because they just can't afford anything else. The thing I've learned about Alzheimer's is that it's just not destructive to the person who has it, but it really does a number on the people that they love. It really does.

Brian: Stress on caregivers, such an important thing not to be overlooked. You point out in your piece that even though there's a greater prevalence among people of color, people of color are less likely to be represented in a clinical trial. You sought to enroll your mother into one. Would you describe what happened when you did?

Yvonne: It was really, really hard and I could see why a lot of people of color can't do this because the amount of time that I had to spent picking her up, taking her to the doctor, all the interviews she had, knowing that she was lying to the doctor and making things up because she was hallucinating a lot at that time. Then after all of that, all of it, she got the placebo. It was just completely not [chuckles] really-

Brian: Didn't do anything.

Yvonne: -helpful in terms of what we were dealing-- No, no, it just was a lot of work.

Brian: Talk about the work because I know you report on that too, that it takes a lot of work, not just for the patient, but also for their caretaker just to be in a clinical trial.

Yvonne: Yes. Just the amount of time I had to spend. They interviewed me as well. I was interviewed, I had to pick her up, get her there. She walked very slow. She was on a walker. It was so unbelievably stressful. I was teaching, I had to call a friend of mine to cover my classes if I was going to be late. I was running back and forth. Every time I was with my mom at that time, it was just so unbelievably worrisome and stressful just seeing the decline at that time, like I said, she was hallucinating a lot. Things were very confusing.

We were trying to wrap our minds around the diagnosis. It was just a lot. It was a lot and really to be in a clinical trial, you need a lot of support. It's helpful if there's multiple children. It's helpful if there's other people that can pitch in and help. In my case, it was really just me and it was really, really hard. It caused me so much stress. I'm glad I did it. At least they could say this Dominican woman was in this trial, but in the end, we got nothing for it.

The only reason she was in a trial was because I switched doctors. I tried to find the best neurologist in the city. I was trying to give her the health care that I felt like a white person would get. In the end, you can't beat Alzheimer's. It's like you're racing to try to get in front of it, but you can't. It's just like a tsunami. It overtakes everyone. It doesn't matter how educated you are, how rich you are, or how poor you are. In the end, the outcome is always the same and that's the hardest part of it.

Brian: Coco in Chicago. You're on WNYC. Hi, Coco. Thank you for calling in.

Coco: Hi, there. My pleasure.

Brian: You have a story for us about something you do with people with Alzheimer's.

Coco: Yes, I do. Prior to COVID, I'm a singer and I sang for people with Alzheimer's and then once COVID began, and obviously there was a major restriction and lockdown for them. I found a way to be outside of some of their facilities and sing from the parking lot or just up to their windows. I've been able to remain connected with the people with Alzheimer's and it's been incredible and it really extra special because they have had no activities, no entertainment, zero. The effect that music has on all of us is significant, but the effect that music has on people with Alzheimer's is profound.

Brian: Coco, thank you for your work in that regard. We've got about two minutes left in the show, Professor Latty. Anybody who's been through this with a loved one probably is shattering a little bit right now, identifying with the story that you were telling and just how incredibly difficult it is. I'm curious if from your own experience so far, you have advice for people who are going through it or may go through it with respect to what alleviates the awfulness to the extent that it can be alleviated. Particularly since this is the angle of your piece in the time of COVID with the particular COVID restrictions on our lives.

Yvonne: One of the things I try to do a lot is remember who my mother was and not let her be defined by the disease, which is a lot what the piece is about, about memory and how powerful memory and love is in getting you through even the most difficult times. If anyone is listening and they are a caregiver, my best advice is to take care of yourself because if you get sick, who's going to take care of the person you love? Who's going to be there? Many times we put ourselves last.

Every day I try to find joy in anything. Even if it's just walking my dog, watching bad TV, I try to remind myself all the time that I'm alive, and that my life was given to me by my mother and that I love her and then I'm doing the best that I can. I'm just doing the best that I can and all of us are. Now, what that best is looks different, but we're all doing our best and we're all driven by love, and so give yourself a break. [chuckles] Give yourself a break.

Brian: It certainly sounds like you were driven by love. That's wonderful as well as excellent reporting. Yvonne Latty, professor at NYU's Carter Journalism Institute and her piece on caring for her mother with Alzheimer's during COVID, you can find it on the NPR and Latino USA.

Copyright © 2020 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.

New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.