Cherie Crosby and Cynthia Samuel

00:05 Hi, my name is Sherry. I am chiming in from North Carolina. But I live in Pennsylvania and I have known. My friend is going to join me today. For 24 years and I am 48.

00:22 Hi, my name is Cynthia. I'm chiming in from Philadelphia. It is July 16th, 2021.

00:36 I've known Suri for as she said, 24 years. It seems like forever fifty years. Basically, you've known me my adult whole adult life, minus a few years because, you know, I started at that school in Philadelphia. That's when we first met and we were working with kids, that special needs. And I'm just curious how, how much have I changed since 97 because you changed a lot. When you first started. I think you were a little taken back by the

01:34 How involved the children were in special at because we work that we weren't. We weren't just in one class with one type of issue. We were in a class with multiple. Yeah, and I think

01:52 As far as how you dealt with the parents, even really from your skin has definitely gotten tougher when you first started, you were an hour now. I'm like, you know, I'm probably the parent whisper whisper which is why a lot of times people come and tell me things that I don't always want to hear, but I'm still be there to listen been compressed in that short amount of. Of time because when I first met you both of my parents were living. I can't. I think it my mom. It was just before she had her transplant. Maybe it was me.

02:51 And she had all her equipment there and knows cat. I want? Yeah, cuz she was at the time that she has any, obviously, the surgery didn't go as well as we thought, but she had the kidney for 4 years and then it was just a progression of stuff that, you know, I never like in terms of my dad and, you know, he just passed as we know me and, you know, we can just pass from Park this past. November. I never really asked him how she dealt with all that, you know, and when you think about like, you know, I know you're an outsider looking in and you probably seen things that I didn't say but between like 97 and what would have been when she died was 2007, like a time that you were around my dad.

03:51 You have noticed anything about how he handled the stress of him. He was the caregiver for her because of her mental illness and diabetes and hypertension. Did she notice anything that could have been the precursor to his Parkinson's disease, which was diagnosed a year later. He was very, he was very attentive to your mom. And so the time that I was around him, I didn't pick up anything even when he started moving slow. We all just thought he was tired. You never, you never made the connection. We just thought he was tired because Riley. So, I mean, he transplanted. We had the complication and he and I would go to the hospital in Philadelphia and we will go back and forth multiple times during the week and

04:51 He didn't have a car so I would pick him up and then then we would dry and I will come back to Norristown from Philadelphia from work and then pick him up. And then we drive down to Philadelphia and you know, during that. Of time like yet he seemed tired, but he didn't really seem tired because my dad was always kind of person that regardless of what he was going through.

05:15 I never showed and never show, let you know. And then, you know, we get to the funeral with my mom. And then that's where it was kind of. Like, I kind of. Remember you saying something? Cuz this is your dad. Okay, and I was like, oh no, he's just depressed or something, cuz I hate you. I just thought I seen him when I last seen him before your mom's funeral. He was, like I said, he was exhausted and then at your mom's funeral, not only did he look wiped out but he was shuffling and accessory your dad. That's what I asked. You is your dad. Okay, and you said, oh, yeah, I think maybe he need to go to the doctor. I said, why is he walking like that? Cuz he was just your father-in-law and he had his head was like what, you know, what? Something when everything calms down. I'm going to see what's going on and it's interesting because between the 2007 and 2000. And

06:15 Diagnosis. She started to have more symptoms of something going on. Like, there was a time where my brother called me and said, hey, you know, that I guess my either, my brother was the emergency contact or I was I have no memory of who got the phone call, but my dad was at work and he was like Kung Fu. Like she didn't know where he was, and, you know, what was he doing there and all this other stuff and so, you know, we had to go pick him up and, you know, at that point, you know, my brother and I were taking them to the doctor, but it wasn't like we were sitting in the room. With my dad never between 2007-2009. We never sat in the room. So we had no idea what the doctor may or may have told him.

07:15 I mean you're interesting enough after after my mom died and we had no actually how to get to the point of where we got the diagnosis and I'll tell this story. So then it was 2000, you know, right after that, that visit that that episode I was like, Hey, that I need to. I need keys again cuz I had already moved out and I need to go in, you know, a, my dad would call me everyday, if just to say hello. It was not a time that my dad, you know, between 2007 between the time I moved out of the apartment, which was around.

08:06 2006/2007. And the time that I found him in August of 2009 and then use that day, you know, he hasn't called me was 3 days 2 or 3 days and I was like, okay, on the third day. I'm going to go in, I open the apartment lights, are off, you know, and it's very dark in there. And I hear like, moaning in the back bedroom and my dad's.

08:33 He's calling my mom's name, Christina is calling her name and Chris and then I go back there and like he's like but naked and like scrunched up like almost like in a fetal position. So he had had to have been in that position.

08:49 Or quite a time and I'll let you know. I tried to like unlock him. But like he was just like totally out and I called my brother and I was like look you got to go over here, right ASAP Dad. Something's going on with Dad. I said we need to get him dressed in a couple of years before my mom had felt like all the aunties. I said. I am not calling you and please do we put on a towel or something. It's just like babe. You can't with me.

09:35 And that my mom at that time. We spent like 200 pounds. I was like, but we're just going to do one bit here. I'm going to get you up. So you don't naturally. I thought it was my little self that I'm going to be able to do that to my brother comes over and you know, my brother as we know is 6/4 and a very big guy, you know, it's like two plus, I mean bigger today than he was then but I don't think you should be saying his weight. I'm not going to say is when all the empty. So we call the EMTs and which is interesting is like I have no real memories from the time of when he went to the hospital. We were told, you know, that she has Parkinson's and that, you know at first

10:29 Up until that point, you know, so there's no memory of like the hospital to visit like totally blocked it out. Like, I like it didn't even happen. Like we just went from August 2009, to September whatever and you know, you a little bit to accept the diagnosis cuz you still you were still dealing with your mom, right? It was just and it was kind of like well, why did not know what did I miss? Because like

11:01 Parkinson's is not something like the shuffling that you you see with Parkinson's and then later on with the memory in the in the hallucinations and things that he would have, that's not something that you you should ignore, wouldn't know, you would think that you would ignore. But it is something that could get lost in the early diagnosis could get lost in the shuffle. If you know, you didn't you're dealing with. Somebody else is also ill or if the person who has a diagnosis isn't really letting you know, what's going on. So my dad never said, whether he was having any problems, you know, but in all honesty know, his plate was full, his play was full. Sometimes. It's the caretakers to go before the person they're taken care of, because they pull a poor so much into the person taking care of that. They forget to

11:53 Think we'll worry about yourself, right? You probably was just missing some of the symptoms is that he was just being tired from taking a graduated high school news 16. So he's just like I just got to do what I got to do. But interesting enough, when we moved my mom out like we moved my parents out of their apartment house because it's clear. My dad wasn't going back to the apartment. We thought he was going to move in me, but that was not the case and he went into the nursing home. And I remember finding a x-ray of a shoulder. I think it was his right shoulder that I don't remember him going to the hospital, but they were looking at the shoulder. Right? And I forget the date of the year of the shoulder. But again that could have been like a precursor to some of the issues that, you know, rigidity and things that he was having with the Parkinson's and then, you know, obviously he goes into the nursing home at. So

12:53 2009. My dad is this point. He's 60 so like a so that I can do I get these books on the Parkinson's books and I'm like I get him several Parkinson's bucks. I cuz I'm like, okay, both of you and I are bookworms. We're going to be like immersed in the knowledge of Parkinson's and so I start reading the Parkinson's and I'm like in my head. I'm thinking like, this ain't going to end pretty for him because he already know.

13:30 I know because like it like it was like this is going to be like I really thought at that point, I was like, which it was, it ended up being that way but like it's going to be a short run like he's not going to be, you know, some of the celebrities are other people that I did find out later who had Parkinson's that have very long runs with Parkinson's disease. My dad at that point, you know, when he would get the books and we were talk about him, you know, when I go visit him and he would say, where, you know, I'm going to be in, I'm in this stage and then I'm going to go to this stage stage. It was like he was somewhat accepting that she was going to be able to. But then there was a part of him that wasn't, which was like the whole piece of like, you would go and he's like, oh, yeah, you know, I'm going to I'm going to get back in my car and you know, did you go check my car, you know, or

14:26 All this kind of craziness and I'm like that. You never know me at that point. I had already gone through that hallucinations and thinking that things are going to happen and the grandest thoughts. With my mom. I wasn't doing this again, my dad. So I probably was at some point. Very cruel. You weren't you weren't cruel with your dad. You were, you were protecting him and you. Yeah, I mean, I mean, look, we had sleepless nights up on the phone talking about your dad, because every by the time, you know, he went in at 60, by the time with 65.

15:14 She was just moving in, probably two. I don't know, stage, two or three. She was getting into that. They was probably was right that year. So we took him out for his birthday in February. I think the last time we took them out, was he there when he was 65 or 66 actually leaving the nursing home because that point

15:40 He couldn't walk without assistance. Like I remember when I used to like up until like between 60 and 65. I would take him out, you know, cuz he like sweet like me so we could go to McDonald's and get something and he

15:59 It was taking forever to get out of the car, but I said, you know, just just

16:09 I don't see your feet moving but he was like, you know, he was stuck right shuffling. Cuz my dad always wanted to walk around and talk and sit with other people and, you know, couple of times he had really bad head, hit his head really bad where we had to go to the hospital and that was like, the beginning of like, where it started to get a lot worse, right? It was interesting cuz people do like, all I'm praying for your dad. And then I, then I started getting angry cuz I was like, if she would go visit him.

16:54 You really?

16:56 Wouldn't say that. That's the one thing I appreciate about you. You never said, all your dad's going to get better. Like you never said, this is going to get better. Because my dad, I don't think because he was, so he was diagnosed late, and she probably didn't have the interventions that he needed to know, when I would go see him before before. Like when I was going to discuss your graduation yet. But before then he like I remember you and I think would help and this may sound crazy but I think would help some to remember me with the fact that I have freckles, right? Cuz everytime I eat. Good good minute since I know who you are. And then when he stopped talkin you could just put his finger up where he would just look at me and then we would have our little non-verbal conversation.

17:56 You could start to see how it was affecting his memory, in his mind, in the sense that you're there were times when I go in there. He's like, did you take my check? What check? You know, my check was in my room?

18:12 What about the roommate? Oh, yeah, you know what? I just going to have to play along with this one because it was, it was it was just very strange because he had, you know, that going on and here's a person I was so bright that they're their mind was not playing right with them, you know, but it really was cuz he whatever, I don't know if it's just his part the way his Parkinson's or the connection. He also had the Louie body dementia. That it just, you know, he's having auditory, you know, our killer kind of hallucination that you can't see, but he sees and believes happened or events that happened in your life that happened right before my dad passed.

19:03 He had his little bout with dementia and I would say Cherie. I just go along with it. I don't even go along with that. And then, you know, that we had the one time I think, I don't know what precipitated him having to go to the hospital. But I remember he went and he had seen a doctor that he had seen early on down in Philadelphia for the Parkinson's and they brought this person up to Montgomery County.

19:36 215 him as well for this incident wouldn't and I don't even remember like why he had to go to all. I remember sitting there and I think it was during an Eagles game or something in your watch me. And John was sitting up there trying to watch the game. And, and I remember it being, like winter time cuz everybody was in there and they were all sick. And they were like, all, they're all these people coming in sick and we're going to catch something, but it was interesting because that's where like, you know, a lot of people when they see my dad or my mom. Did your dad have a stroke? And I was like, no, not really. He didn't have a stroke or like maybe his neck with curves. And so I actually got to see the X-ray wear whatever, what was going on and I'm assuming it was associated with Parkinson's cuz she didn't have that, you know that his neck was hurting like that. The spine was turning and that like his

20:35 Michael Kor basically a piece of it or the bone had broke off and it was kind of late getting into the cord, but it hadn't gone into the court yet. So, you know, the doctors explaining to us like, you know,

20:51 You can do surgery but it's a very evasive surgery cuz he have to go through the nose. And you know, we just opted not to because at that point he couldn't walk. He was in a wheelchair by that time and then, you know, and then that was a point where he's in a wheelchair, but he can't will himself, he's got to be and can't feed himself, you know, and I think that part was little crazy and then obviously, you know, we get to the the graduation. So I let you know. I finish my PhD and I remember, you know, what, my for my back was I didn't go and I wish I had gone because my mother, I told my mom, all you'll see me graduate at the Masters level and then she died. You know, that November before the April that I graduated. So then here's my dad. He went to my masters, but here's the PHD and he can't go, right? And I have to go to Atlanta.

21:49 And I remember asking you you were you were going to come, but you couldn't come to the graduation, something to happen. And you couldn't come. Can you just go to the nursing home? Just to make sure he's my brother doesn't get there. Make sure because he was supposed to come and something happened. He didn't make it just to make sure that my dad saw him. And I always will remember that beautiful picture of you holding up your phone and my dad looking, you know, trying to see them a little tiny scream. I mean walking across the stage, which like,

22:32 Not a little bit, but the funny part is that's the funny part is when I got there and I said don't hurry. I'm here and I'm glad you made it home moving.

22:54 Okay. Well then before you move, I want you to look at Surrey graduating and he has very few at like I'm living with the language language that he told me, he was moved. Oh, yeah, and then I got this but I needed that was the best I mean because that's that's one of those moments in life that you would really want your parents to be there, but they can't be that was 2016. Right? And then we have right after that. She has the really bad episode where he wasn't, I think it was the beginning of the end, right? So he was having some issues when he wasn't eating and

23:44 And so they sent him to the hospital and I think because of him being in a chair for that long, something that probably has anybody that's wheelchair-bound. Tricoli probably Parkinson's patients towards the end when they get to stage four or five and his bowels were just packed up like your dad. And, you know, they were trying to clear it out with antibiotics and we're getting really close to them having to do surgery but then it he finally went and then he was good and he went back. And then I think the worst part about my dad's diagnosis was the fact that and hopefully I won't cry on this. But if I cry, it's okay, you know who would have ever known that we would have had a pandemic that you would not be able to see someone that did really need to have a weekly visit, you know.

24:44 Humans for no human familiar and I remember that December. I went to see mad and I threw back January and I remember January. They're talkin about all. There's this virus. Probably. Okay, whatever. Yes, like what? Like before, it's not going to be a problem, right? Then. I hope you know, I still got my dad's birthday was February 6th, same day as someone else and they actually the day that my boyfriend, my fiance's father died. And so, last day I get to see my dad and then I didn't for some reason, I thought there was some whether or not, I think I saw him. I went to go see him, right? At the end of February, to go really bad. So, I went to go see him right before I flew out for that week in March, and then, you know where I'm away for the first week of March.

25:44 And I remember sitting in the airport and like, all this covid is here and it's there was passenger flying through Charlotte, cuz it's when Matt lived in Augusta Exchange in Charlotte, and I'm thinking, okay. Okay, I was a little unnerved cuz I was like on my plane but and then so I came back tonight. Right? And I remember because of hearing that there was a patient of a person who came through Charlotte with covid-19 sided. I was not going to go see my dad weekend when I came back. I would go see my dad like that day or the next day. I decided not to go because I was like, you know,

26:29 Better take a lot of people who are sick and then the 13th. You got the, you got to stay in quarantine. And even then I was like, okay, this is going to be short-lived, right? Like this coming two weeks. We're going to be and I remember going to the grocery store going to the big store near our house and having there's no meat in any of the cases. So, I got no toilet paper and I'm thinking like, this is like that movie with the zombies. Like, you know, it's like zombie Acropolis or other movie like truth about the viruses, right? So I'm like, this is crazy. So, little did I know that I was going to spend March. When did I leave to go? Finally? I was able to go see. Matt and spent like the whole summer with

27:29 That was until June right right between March and June that I did not get to see my dad. And and then basically, at one point remember we was like, we won't get a Hazmat, we going to be like now because you couldn't see him and then some kind of way we got when you got in contact with a nurse I think and they can put the phone to your dad and Lisa can hear your voice. And then one time she there over the summer. They were like there was, there was the first time it was a call. Then she used one of the apps. I was able to let you know, see him visible and then like shortly after that one.

28:17 I noticed that his the way he was with not the same, right? But there was nothing I could do because he's stuck in the nursing home, and I can't go see him.

28:27 And then,

28:30 You know, shortly after that they say oh, you know, your dad, your dad's covid but he has no symptoms. So my dad got covid. No symptoms. Surprisingly still here, right? Because I'm like that should have killed it at that point. He was end stage Parkinson's disease. Then the last time I got to see him before, we got to see him when they was the whole thing that participated. His that preceded. His death. He'd like barely was talking. So something was clearly going on. And I remember that really angry at America cuz people were complaining about wearing a mask, and complained about the couldn't go to the hairdresser and all the stuff and I'm thinking, like, do you know that there's millions of people like myself and my friends who have parents who who are older and cannot see them and have no idea whether they are functioning well or not. I still have anger over that.

29:30 I think you do. You think about forgiveness. I think that's the one thing. I'll never forgive America for because they robbed me of several months at the end of my Dad's life, which I think it's unfair but it's just the way that life is and then we come to October where I get to call for my brother. They said my dad is not swallowing and they take him to the hospital the hospital, the very same hospital where my mom died. So I guess I was a little unnerved like going to be in the same room. We don't want to go and I remember going up there and let you know that I remember talking to the doctor that was a female doctor and she said she you know, she said she was very clear, like your dad. This is the end like this and Stage kind of thing. There's not a lot we can do. We can give him the feeding tube to see if that'll help him. But you know, so my brother was

30:30 The time he was the one making the choices and and I think at some point they put them on mush diet because he was having trouble swallowing. So, you know what, I think, you know, not being not seeing your loved one or some of that constantly would bring and come and see you what I'm already stuck in a diaper. I'm already stuck in a chair. I'm already. I can't have a normal conversation because I just mumble my quality of life is gone because I don't have those visits. I don't have my chocolate chip cookies and and you know, Kate can things that I would bring him. So then you know,

31:20 October in his brother, defeating to the feeding tube fails within days. And at that point I was like, John just

31:29 We can't do any more. John wasn't ready. I know he wasn't very angry process of things. But you also knew that this is not what your dad would have wanted to know. John was on the other side. And you know, when the time comes, I need a two week. Notice like I need to do so you still in hospice, no food. No water were allowed because he's in Hospice. And that in the nursing home is working with us. We are allowed to go in with full PPE.

32:29 And you know that last week, you know, we were allowed to go anytime. We want it cuz you and I remember like it was the weirdest thing to watch someone like the process of Death happen for person cuz I didn't see that with my mom like, you know, I deliberately did not. I wish you didn't have liked that she had some of the process of the death that I saw. But his was like the first time that I really like it was really strange. You know, I'm in the same, respect my dad, still look great, you know, like no no wrinkles, you know skin glowing. I'm just like until the very end, you know.

33:16 And I remember the last day just going up there cuz the nurse called there were a couple of false like you're going to go, he's going to go but then that last day it was clear. My brother called me says, you know, they say it's probably going to happen today. So and my brother was out, you know delivering so I I went over.

33:39 And I remember going there in the nursing home being like, Oh, I think we need to test for covid. I was like, yeah, you think I've been here all day, but I can't say the name of the song but we are just playing a particular song over and over and over and just playing music like that whole week. I would just play music for my dad and I would put my hand like on his chest. Just the kind of like, okay so you don't have to accept this because the one tell that your dad was very very healthy.

34:14 Oh, I can say the name. OK, the name of the song that it was I don't even remember the name of the song but it was

34:24 But it was Tori Kelly and this other African American male song. And, and it's all about people at the end of life. Like, but it is in this song. Is like, in the song. It's really about these kids who have cancer and, and they survived the base, some of the kids Survivor cancelled and the kids that don't they like they liked the kids around in the wheelchair, but they're ghosts. But I just play that song over and over again, cuz it's so uplifting. Right? And I remember my dad has that kind of response to it, you know, but then that last day, you know putting my hand on his heart. I could see you like the heartbeat was, you know, and I remember asking where the male nurses like. Can you check his heartbeat? I can easily guess if you know it's going. So I was there from 1 to 5. And then at that point like I was like my dad's going to die and I'm going to be asleep. Like I'm going to fall asleep and wake up.

35:24 And he said, they're not going to be there because they can't be afraid to wake me up.

35:29 Or he's going to die and I cuz there's no belt, like, he's not machines. I wouldn't hurt anything. Right? So, I decide to leave. And then my brother, I tell John like, hey, you should just come over because I think he's going to go tonight, you know, just come over. So he has somebody here, you don't the peace year when he dies, but like, you know, and my brother came like maybe 6:00 6:30, and I think he left like 10 or 10:30 and then my dad died right before midnight and literally was like 13 days and almost 14. And I was like, my dad is so powerful. He is Superman. Like you really mean and so so, of course, when I get the call, I don't do I call you. I don't think I called you cuz I know you called me.

36:29 Step on that day. We were on the phone cuz I didn't go anywhere. I didn't do anything. And I told my husband, I said to be here for sure, because everyday, you don't want to downsize and so so every time you called her answer, the phone when you called, and he was like, I said, I already know Cherie. You're stuck in the house and it was just so weird. But thank God that, you know, my brother did all the arrangements cuz my dad has a military funeral because he was in the Navy. And thank God, the funeral home that did the service. And did, you know, straightened out? My dad's neck filled out to space brought back his color. My dad. Literally, you know, although he was spinner, right? She literally looked like she did free.

37:25 It was like, she hears this person's face where Parkinson's did so much to it. You know, it did so much to his body apps that can see his mind anymore because he's gone, but it did so much to his mind. But this person really is at peace and I think that's the piece that like, it was the same thing when I saw my mom, I didn't I wasn't there when she died, but I came after the hospital had cleaned her up. And took her, took her off the machines and how peaceful.

38:00 You know, me and I think that the end piece that even if you have a chronic illness, even if you if a person has Parkinson's and help is painful, it is for a family to watch the loved ones, go through that and even more painful, probably for the person and frustrated for deep frustration, for the individual, going through it. The end always ends. Beautiful. I think I think even though you don't want to lose your love one. I think it's like the it's too cuz you know like

38:31 It's almost like cuz I know with my dad.

38:35 When I got to him, he was still warm, but he had like a glow, like, no signs of the drawing up that he was be hours before. I had think it was, and it was such a

38:49 All right. I'm going to I'm going to fall back cuz I'm getting stuff in the end. The person is brought back to what?

39:06 The true. What life is really supposed to be for that because there's so much from birth to death. There's so much mush. There's so much, joy pain, happiness sadness, gladness Madness craziness, and although my dad only had 71 in and almost seventy-two years of life in the end. She just she look like the Superman that he was and which is why we wore those masks, you know, we had them asked that we wore during the funeral. I wore this year during graduation. And when you do, anytime I do a walk for Parkinson's Mass just because

40:00 I was supposed to ask you if I have to ask you a reflection. Do you have any Reflections about this? Like, I'm at cuz, you know, I like to talk a lot because I was going to ride with you so I don't have to say anything cuz I was okay, but what I was getting ready to say before you said that, was that.

40:24 My experience was a little different than yours. But both of us going through what we went through. I think it kind of made us both come out to be

40:37 Super women in our own, right? As far as I'm concerned, it's also taught us to just be like a little more patient with people because even like we didn't know with your dad had, you know, a scientific doctor saying no he has this but we kind of sensed something was wrong. And I think going through that and going through it with you has made me sit back and look at people like, oh, you know, you don't know. They walk, you know, you got to be a little more careful or you can't be. So like even with my mom and I still have my mom, thank God, but I see her coming up on a dicey agent for her and dealing with you and your dad and even with your mom is giving me. I mean, I'm a very patient person.

41:29 Yeah, as quick as death comes the person, the family members left behind really. Do you do have to accept that? Not accepting a person's pending death? It's going to cause you a lot. You know what, you know what, I look at it. I look at you and other friends that I've had that I have who've lost who's lost both their parents and I know my day will come with my mom and that's,, cool and collected impatient as I am. I know. I'm going to have to pull on you guys experience. So with each,

42:06 Each conversation we have weather's about what's going on in the world with that. Whatever. We both we exchange and we learn from each other. And that's why I value your friendship cuz you're the one of my friends who are twos just world.