Chapter 8: Walter's Death, Finding a Path for David

18:57:37:18

Lisa: I wanted to ask you both, David and Kate, about something that I know is more difficult. In 1986, I believe, your family experienced the tragic loss of your brother Walter. And I wondered if you could tell me a little about the circumstances around his death?

Kate: Yeah, that's really difficult. So, um, Walter was living in his house in a community living arrangement, he was living in his house, and, um, he choked on a peanut butter sandwich. So I remember - I was living in California at the time - and I had just moved there for a job. And my mom called on the phone, and we spoke all the time, and I could tell that her voice was different. And, um, all she said was, "Walter's dead." And I just, like, I couldn't, it didn't sink in - what did that mean? That's not possible because Walter was so young, you know, he was in his thirties. And she said, "Walter's dead. You have to come home, Walter's dead." And so, um, he was living in a house and he went into the kitchen and there were peanut butter sandwiches on the countertop and he took the peanut butter sandwiches and he shoved the peanut butter sandwiches in his mouth, and then he choked to death and died.

Um, so there were a couple of attributes about this. First of all, both David and Walter have a particular difficulty swallowing; they don't have a gag reflex. And so the gag reflex for all of us is something that, um, will prohibit you from choking because you will start to gag and you won't choke. So they don't have a gag reflex like we do. And the other thing is that, I don't know what the technical term for it is but they just used to call it shoveling, so if someone would want to just consume things, and put a lot of things, and so if Walter something that he found really tasty, he would try to eat a bunch of it before anyone else could find out that he was doing that, and, um, so that's what happened. It was a major, traumatic event for the family. It was a major, major family event.

19:00:25:19

Lisa: Did you find that the staff of the house or the provider agency that served Walter took responsibility?

Kate: There was no responsibility for it. No one took responsibility for it. They said that, basically, Walter killed himself. He went into the kitchen and he initiated eating the sandwich. He ate the sandwich and so he choked to death of his own accord. Um, so that was, you know, that was pretty difficult, and its hard, um, you know. Our mother was always on the edge of things, you know, so she kept pushing the line forward in terms of what was right, and that these things were right, and that all people should be able to be in the community and that all people should be able to be at home and that all people should live in a house and have that kind of environment, and all people should be able to have employment, for example. And so she, she really pushed everything forward like that. And so in some ways Walter was collateral damage. And throughout the process, through the school system, through the deinstitutionalization phase, all the way up until the community living phase, it was really Walter who was really on that front edge of the wave, of the changes happening. And so when he was doing things, the system wasn't really ready for him - he was the first man out.

Now there were a lot of changes, of course, after that. There were new regulations that were put in place, new quality control methods, there were no significant quality processes up until that time because everything was still new. And certainly the regulations helped other people in other houses. But it was too late for Walter.

(To David): And um, Mommy used to always say, that everything that happened for Walter was there for a reason, and the reason was you. And that everything that happened to him was that so you would end up having more of a life and that you would be safe. And, um, she really believed that, she really believed that.

Lisa: So, Kate, you had mentioned that your mom's thought was that everything that Walter experienced in many ways paved the way for David, for your future and for your successful life from the community. So, David, since we are in a way talking about you, I wondered if as your parents got older they were planning for your future, and Kate was there any expectation on your part or theirs that David might live with you or one of your siblings?

19:04:11:26- 19:08:10:22

Kate: Um, we talked about it. We had a conversation. It was an expectation that I had. It wasn't an expectation that they had. So, at the time I was married, and I came home and talked to my mom and dad about what was going to happen with David. We had the conversation because our parents really were getting much older, and this was something that they were trying to figure out and that they were actively planning for, and so, they were having conversations about what if and what happens when, so I came home one day, and I said I had the answer. There was no problem with this, because you know, as soon as it was time, then David would come and live with us, and that seemed like the really logical, obvious conclusion, that you would end up living with Tom and I, and Tom was a really terrific guy, and it would have worked out, I thought, perfectly. So, but our parents certainly had a different idea, and their perspective, right, their perspective was absolutely not, and that David had a right to his own life, and that I had a right to my own life, and that they didn't want that to be my life, that they didn't want my life to be all about taking care of David, and I couldn't understand it. There were a lot of things at the time that I just couldn't understand, and this was one of them. Why wouldn't they want that? It seemed so obviously me, and then later, through additional conversations, and certainly in more frequently, I more recently, I realized that caregivers have a really hard life.

It's really a hard path. Typically, one of the individuals ends up being a stay at home person. There's typically only one of the individuals that can have a job because of all of the care giving requirements that our earning potential probably would have been half of what it was, that for example, in my career, I've ended up traveling around the world and living around the world, and certainly none of that would have happened. And so, part of that whole equality idea for our mom was that there should be an equality of life for the siblings as well, and it's funny. Nobody really talks about that, but it certainly was our family perspective, our parents' perspective that everybody had an equality of life. Everybody deserved the same things. Everybody deserved the home, the job, the family, the people that you live with, the people who care about you, and that it's a natural thing for an individual to grow up and leave home, and if David would have come to live with me, then it would be like he hadn't been growing up and leaving home. So anyway, we had a ton of conversations about what would happen.

For me it was really hard. It was really hard to conceive of David going into a community living arrangement because of what happened to Walter, and so, I was terrified about that option and what that would mean.

(To David) I was really terrified about what that option would be, and how long you would be able to live in a community living arrangement and what would happen to you. Lisa: OK. Kate, you said you were terrified about David living in the community because of Walter's experience.

Kate: Yeah.

Lisa: Your parents had to be equally terrified, and yet they planned for David's transition into the community. How did they get past their fears?

19:08:41:21-19:11:01:13

Kate: (To David) So, when you -- when mom and Daddy were moving you into the community, they were concerned about it too, but I think that they really had an idea of what the alternative was, and the alternative was Pennhurst, right?

So how did she put it? My mom said to me once that it was not going to be the quantity of years but the quality of years, and that her goal was to be able to provide David with the maximum number of quality years that she could provide him, and that's what she set out to do how could she provide the maximum number of quality years, and always in the background, you know, before the community living arrangements, that backstop was always back to Pennhurst, back to an institution, so this really was progress, and so it was really a matter of how to put the safeguards in place for this to work. So we were back again to, you know, let's teach everybody, let's explain to everybody what to do, and so, when Mommy and Daddy picked the house that you would live in, she interviewed a number of the different houses. She was really thorough about the location. She was thorough about all the people that you would live with, who your roommates would be, how all of you would fit together. It was a careful consideration, and then, she spent a lot of time coming to your house and visiting with you and talking to the direct support staff and working with the direct support staff so that they could be more educated, and they could learn how to do things, and so it really was a full-time job for her to be at the house. So she spent as many hours as possible at the house in what she saw as a teaching capacity so that when something finally happened to her, that there would be this structures in place for some sustainability, and that was her -- that was her goal.

Lisa: David, you moved into your house in 1990, I believe. That was a fewer years before your dad passed away. Can you tell me if you liked living in your house, if that was something that you had wanted for yourself?

19:11:48:20-19:13:14:09

Kate: (To David) How did you feel about moving into a house, moving away from home? I know it was hard for me when I moved away from home. How about you? In the beginning, when you moved away from home, you still spent a lot of time back at the house, too.

So, he lived in his house, but he would have lots of day trips back home. Right, so he still got to see Mommy and Daddy quite a lot, and Mommy was over at your house all the time, and it really worked for the transition, right? Like some of the guys.

(To David) It was very different, though, because even though we grew up in a really full house, by this time, you had been living at home alone with Mommy and Daddy and sort of getting all of their attention to you, and you were sort of a spoiled brat. That's OK, because you know, the rest of the kids say that I am, and I think that it was probably hard for you to move to another house and then have to share everything with everybody else. So, it was difficult because it was like having a bunch of brothers and sisters back in the house again, you know. But it was pretty good I think while my mom was there.

Lisa: Kate, your parents made you David's guardian, is that right?

19:13:22:04-19:14:38:05

Kate: What they did was in their wills they, at the time I did not take guardianship, so they identified me, but it is not a legal construct, and so they named me as his guardian in the paperwork, but it wasn't a legal guardianship, so I didn't sign any papers to become David's guardian. So, yeah, so in their wills, they had identified me, and that's part of the conversation that we had. It was part of the conversation of what would happen next, what would happen next, how would everything work, what if something happened to them, what would my responsibilities be, what was expected of me, and we had a significant number much really very serious business-like conversations about how is this going to work.

I was living, as I said, I was married at the time. I was living in Maryland, (To David) and you were still living from Philadelphia, and yeah, it took some figuring out what it would mean and how it would work and what my responsibilities would be.

Lisa: And why is it you think your parents asked you as opposed to one of your other siblings?

19:14:44:20-19:16:13:19

Kate: Yeah, the hundreds of other family members that we have? So, I think that there were a couple of -- I think there were a couple of things, some really practical -- just really practical considerations. One of them is that David and I, we are only two years apart. You were older. David turned 50 this year. I like to keep reminding him of that. (To David) Don't worry. I remind everybody else of their ages as well, and they're going to have a heyday when I turn 50.

So yeah, so we are only two years apart, so part of it is the consideration of the possible longevity. Part of it is that in my career, I was a business person, and they saw a large part of this on an ongoing basis to be dealing with it as a business, to be able to deal with the provider issues, to deal with the financial issues, to deal with whatever health care issues would come about, that all of those would be sort of business constructs, and I don't know what conversations my other brothers and sisters had, but I know that throughout many years, pretty much from the time that I left home until the time that my parents died, I had conversations with them about what would happen with David. So, it just seemed logical, don't know.

Lisa: Kate, you had the conversations with your parents. They had certainly designated you as you had said, to be David's guardian, but had they kind of practically prepared you? Had you been involved in support meetings or any kind of provider meetings on David's behalf?

19:16:34:10-19:20:12:29

Kate: Yeah. It's interesting, because all of the years until I left home, I had attended everything, right? You know, I was there to do the marches, to have posters, to do the whole thing. I was certainly there during the school, all of the school events that happened. I went to court with them for example. But at the time that I moved away from home, then I wasn't attending anything, so I hadn't gone to David's planning meetings for example, and so I wasn't involved first handed. I hadn't gone to these meetings. I wasn't participating in that way.

Now, Mommy was certainly talking to me about it, so when she would go to one of your planning meetings, then she would call me afterwards, and we would sit and talk about it, but I can tell you, it's not the same thing, as being there, and it's also not the same thing as having the responsibility.

(To David) So, you know, little things changed, like our relationship is kind of a complicated relationship, because sometimes I'm your sister, and sometimes I'm your business manager, and um, sometimes a nudge, and sometimes I'm a financial manager, and sometimes I'm sort of the health care guardian, if you will, and so, the role can be very complicated. If I'm visiting David, then it's always a question for you, why am I there, and what role am I playing at that particular time? So it's really very -- it's a lot more complicated than I thought that it would be and a lot more complex than I thought it would be.

Also, I didn't understand that I would wake up every single day and wonder what if something happens to me, and so part of passing the mantle from the parent to the child is also passing that responsibility, that worry, that every single day worry, what if something happens to me. You know, in the beginning, I had an assumption that I would outlive David, and that was certainly based on what happened to Walter, and what had been happening in Pennhurst. Now I worry, my jobs can be pretty stressful, and so now I worry that maybe David with outlive me, and then what will happen. I didn't really expect, being the youngest, I didn't really expect to have to deal with any of those issues. I don't think that our parents expected me to have to deal with those issues. It was part of the plan was that those wouldn't be issues for me. So yeah, it's kind of surprising, and it's hard every day to wake up and say, what would happen if something happens to me. I was in a car accident this year, and it was pretty dramatic event in the middle of the car accident, that was one of the things I was thinking was, oh my God, what's going to happen to David?

(To David) So I was less worried about what was happening to me at the time. There was a lot going on in the moment, but in that same moment, I was worried about what would happen, what would happen to you.