Allan: Tens of millions of families with Alzheimer's disease and dementia all over the world, including our family. We are Alz In The Fam. I'm Allan Fair.
Poli: And I'm Poli Fair Noyes. We're siblings, we’re parents, but we're also caregivers.
Allan: This is our podcast. This is our support group. Welcome to our family. Alzheimer's sucks, but this family lives, laughs and learns as we fight for a cure. Welcome.
Hey, Poli. So, it's been a heavy week for our family. Um, just I will dive right in. My son Marko, who is 10 woke up on Thursday… Wednesday actually not feeling well. And he ended up having appendicitis, was diagnosed, had to take him to NYU Hospital. It's May 17. So, the time of this recording New York City is famous for many things, and certainly the coronavirus outbreak is one of them. So, um, we had to take him to NYU to get his appendix out. He's home safe and recovering, but wow. I'm sure everyone, probably at some point has maybe thought the back of their mind, “I sure hope I don't have to go to the hospital myself during this pandemic”. I know I certainly did, and we went, and we had a really great experience. The people at NYU were absolutely wonderful. I mean, it was a horrific experience, of course, because I love my son and didn't want to see him in pain, but the doctors were great. The nurses were great. The entire health care system that I saw and experienced was great. So, while there's a lot of tough things happening in New York right now, NYU hospital is doing some wonderful things and I can report that other patients were getting the help that they need as well. Yeah, so…
Poli: A good outcome from a really scary situation.
Allan: Thank you, Poli. He's doing great. And while I don't want to minimize him or his recovery at the end of the day he’s a 10-year-old with his appendix out, and he's recovering fine. More heavily, though we had a double whammy of a week where we also found out that our mom, Carmen, has tested positive for COVID-19.
Poli: Yeah, so I got a call from her assisted living facility, her memory care facility, late last week, and they said “We're going to test everyone in the facility. We've had a couple cases, maybe four, and we're going to test her on Monday. Do we have your permission”? And I was like, “Sure, it's a good idea”. So, they tested her on Monday, and on Wednesday they called and said, “Your mom tested positive for Coronavirus”. I knew from the staff there that she had no symptoms at all other than being tired, which, like a lot of people living with Alzheimer's, she kind of has her night and day mixed up. So, she sleeps until noon often and it didn't seem… that was not out of the ordinary. She didn't have a fever, didn't have a cough, didn't have anything else, um, so we were encouraged by that. On Thursday, she didn't really eat much and that was a cause for concern; she didn't want to drink or eat much. And, so Friday, when she woke up at like noon, the person in charge of her floor - wonderful person, great carer, she was concerned because Mom again didn't want to eat. And she usually likes her coffee in the morning and her breakfast and fruit, and refused all food and water and wasn't, just didn't seem herself and had a rash on her face. So anyway, she called 911. Um, and long story short, the paramedics came. They were wonderful. Mom walked over to them and said, I'm fine. They took her pulse; they used a pulse oximeter to test her oxygen saturation and among other things, but it was at 98% which is perfect. Good. So, they offered to take her to the hospital, and she refused, which I'm sure glad she did, because this brings up Allan, what we were talking about - how difficult it is now in a time of COVID-19, to send someone with Alzheimer's to the hospital. They don't know why they're going or anything, and they can't have anyone with them.
Allan: Terrifying, terrifying imagining our mother or really any person with Alzheimer's at the hospital during this time, having no idea or remembering why they're there. And specifically, with regard to in the time of COVID, their family members cannot go there, right, and be with them?
Allan: A horrific combination that has really made us rethink some things about her planning.
Poli: Yeah. So, that brings up, you know, the one thing we really don't have a lot of time today to give our normal longer podcast, but I wanted to share with you one of the things we're really thankful for. And that is that we, quite a while ago sat down with my mom's doctor and filled out Advance Care Directives and Orders for Life Sustaining Treatment. So those can be found; most states, I think 46 out of 50 states in the United States anyway, have websites where you can go and download a form for that specific state that says your wishes if you should get really sick. So, Mom had those on, they were on file at her care facility. Her doctor has a copy of it, and I was reminded that I read the book ‘Being Mortal’ by Atul Gawande. I really hope I said that correctly.
Allan: I know it's a hard name to pronounce, but, um, it's called ‘Being Mortal’, and we highly recommend it for anyone who finds themselves in a similar situation to ours or is interested in just rethinking and rewiring for how they think about death in general. But specifically planning for the death of a loved one as well as for oneself.
Poli: Yeah. I mean, the subtitle of the book is ‘Medicine and What Matters in the End’. And I think if you have a loved one with Alzheimer's or just someone who's getting older, really any age, what matters in the end, you really need to think about it now. Don't wait till the end. So, to bring it back, we already have one of these in place, but what was really important is we needed to, I realized when they called an ambulance for my mom simply because she was kind of lethargic and didn't want to eat, I realized that I needed to think about what her Orders for Life Sustaining Treatment said. So, when mom was first diagnosed with Coronavirus, the first thing the care facility did was call her doctor her primary care physician and tell her, and the doctor said, “Okay well, watch her. If she gets worse, take her to the hospital”, because the doctor knows that's what mom’s Orders for Life Sustaining Treatment say. And again, we couldn't envision what things would be like in a time of Coronavirus. So, we're going to take a look at that now and think about when would be appropriate for mom to go to the hospital. Certainly not because she has a rash, I don't think. Oh, also on a side, I should have mentioned before - she also told the paramedics the reason she wasn't eating is because she couldn't taste anything, which was the first actual symptom of Coronavirus we'd seen from her. The rash she had, by the way, we also had a doctor look at and was not a Coronavirus-type rash. Anyway, so, I thought I'd just briefly talk with you, Allan, about, I think you have a copy of mom’s Orders for Life Sustaining Treatment. Everyone in our family does, but…
Allan: I do. I have mine right here.
Poli: All right.
Allan: It’s a fun document, let me tell you.
Poli: Yeah, well, it's actually you know, I was lucky enough to sit with mom and together we talked to the doctor about it, and similar to Atul Gawande’s father when he talked to him about his end of life, what he wanted, his father was very clear. Mom was very clear about what she wants, what her wishes were, which really helped me and will guide me always. And it can take a lot of guilt away from you. And those are hard decisions to make. I mean, it could be that even among the families as close as ours, Allan, one of us might think things should happen one way, and one might think another way.
Allan: Right, just as you helped Mom with hers, I helped our father with his, and just to tie back to this this book by Atul Gawande, whose name we hope that we're pronouncing correctly; one of the things that book really did for me is that it helped me think about this push pull of wanting to give your parents what they need and then what you reflexively think that they want and need. So, Dad didn't want to be resuscitated either, and I remember thinking, “That's crazy. Of course, he wanted to be resuscitated. Of course, you want to survive”. And what I realized as he got sicker and over time, was that no, he didn't want that at all. He wanted to ride out the end of his life with as much dignity and independence as possible. And if he was going to go out and have heart disease, and have a heart attack and die, that's the way he wanted to go out. He didn't want to get taken to the hospital and hooked up to tubes to survive a little longer. He wanted to ride out his life with his much independence as possible. And I remember just thinking “God what a, what a cynical thing”. And as you get older, and what this book talks about is starting to think about death differently, so that when that unfortunate time comes, and it does come for all of us; our bodies age, our arteries harden, our brain shrinks and gives us dementia and Alzheimer's…
Poli: Anything could happen.
Allan: You know, you have to be careful for what you wish for and what you articulate to your children or loved ones who are going to help you with that because I know for me, I started out coming from a place, “Well, I want to live as long as I possibly can”. But I actually don't want to spend my final two years on a ventilator, and I don't know how long people live when they're on the ventilator, but my point is that, I want to rethink my final years and don't want to suffer through just so I can reach an extra birthday.
Poli: Yeah, I think it's all about quality of life, not quantity of life. Nobody wants to live, you know, two years longer in extreme pain or two years longer, you know, tied to a ventilator. I mean, I don't. Maybe there are people that do and that's OK, as long as the person has. I mean this is my only idea is that people really want to ask their parents while they can, or their loved ones: “How do you want your life to be in the end”? And then the other thing that's on an Order for Life Sustaining Treatment is the hospital transfer portion. And that's really important in Mom's case. It wasn't for Dad. Dad, I know refused being transported to the hospital a couple of times as well. And, you know, he still had, uh he well he did not have dementia let's say. So, he was still able to think clearly at that time. But in the time of COVID-19, I think that's one of the parts I need to look at for Mom because I don't want her transferred to the hospital alone. I do want her kept comfortable and that I, you know, there's a lot of things that can be done without being in a hospital to keep someone comfortable nowadays.
Allan: We really learned this week that these Orders for Life Sustaining Treatments, you don't do it once and it's something that's off the list in terms of being a caregiver. As the world changes, and the world has certainly changed in the face of COVID-19, here we are reevaluating something.
Poli: Yeah. I mean these orders were so carefully written to make sure they covered a lot of situations, but nobody knew about COVID-19, so you know. The other thing is, we're going put some stuff in the show notes, Allan, for people. There is one good article I read, it was an Op-ed in The New York Times written by a doctor about what it's like if you're on a ventilator, and that really helped me, and I'm sure it would have helped you, like with Dad when he was making sort of decisions for himself, to read that article, because it explained perhaps the outcome after being on a ventilator and what that could mean for even a young person, right. So, we'll put that in the show notes. We’ll put a link to the polst website, which is p o l s t. It is every state, just about every state in the United States, there's a link from that website to their Life Sustaining Orders, just a form you can fill out and get your doctor to sign. And we'll put a link for Atul Gawande’s book ‘Being Mortal’ because we just think that's fabulous.
Allan: We do and, we had a different episode plan to deploy this week as our next episode. And so, in finding out this news, we thought it would be more appropriate to share something that's timely. So, for all of us out there, all of us caregivers, and all of us now dealing with being a caregiver in the time of COVID-19, let us offer a lot of love and solidarity to everyone. And perhaps we'll be revisiting this topic. More we’ll keep our listeners posted as to our journey, not only with our mother having Alzheimer's, but also in whatever comes next with this COVID-19 diagnosis.
Poli: We should just say, Mom today is doing pretty good. She's eating and her rash is gone. I don't know if she can taste anything, but she's eating, so that's good. She's walking around.
Allan: Yeah, after the week that we've been through, mostly what I'm able to focus on is just being grateful. Grateful that we have each other, grateful that even if she has this diagnosis outside of her normal symptoms of having Alzheimer, it's still just seems like she only has Alzheimer's.
Poli: Well so far, she doesn't have a lot of other symptoms. But I'll tell you, it really spread quickly through her nursing home. like the stories you're hearing up in New York, New Jersey, but here in Maryland as well. You know, there were four people that had the virus one week and the next week, it was 30.
Allan: One week feels like a lifetime these days. I mean, I FaceTimed with Mom, maybe a week or 10 days ago, and it was just the same circular conversation that I've grown so accustomed to over the years: complained about the weather, the sky was slate grey. “How are the kids? Tell them I love them”. And then, “How is the weather? The sky is slate grey. Tell the kids I love them”.
Poli: Right. Asking about Tina usually, I'm guessing.
Allan: Yes. And here we are now. So, she’ll probably still say the same thing, because she probably doesn't even know that she has it.
Poli: I talked to for a while yesterday, and actually, I read some breathing exercises that, I guess a nurse somewhere had talked about and had posted a video of that J. K. Rowling, the author of the Harry Potter books, she had put a link to them. And so, I was talking to Mom about them, and she was actually doing them on the phone with me. So, she won't remember to do them after we hang up, but it was just fascinating, her desire to keep trying to be healthy.
Allan: That’s probably what's going to help her. Even though she has this COVID-19 virus in her, is that other than her Alzheimer's and dementia, she's quite healthy.
Poli: Very health.
Allan: Bodily speaking. So, yeah.
Poli: All right. Well, Alan, I think we can sign off. You can get back to looking after your son's poor appendicitis.
Allan: Yeah, going to go get a look at those bandages and see what's going on with him. Probably a lot of Minecraft playing and talking with his friends on the iPad. So, all good. We're lucky. Nice to be with you Poli.
Poli: Yeah, same Allan. Love, you know everyone out there, our thoughts are with you and keep fighting this together. Bye.
Allan: Bye Poli.
Thanks for listening to Alz In The Fam. In the fight against Alzheimer's and dementia, we are all family. Find us at Alz In The Fam on Instagram, Twitter, Facebook, YouTube and on our website alzinthefampodcast.com. We appreciate you clicking that subscribe button on Apple, Google, Spotify or whatever your favorite podcast catcher may be. Alzheimer's sucks, but we're in it together. We are Alz In The Family. Talk soon.