Chapter 7: Reflections on Work, Inspirations

23:34:30:17 - 23:45:31:19

L. So we've talked a lot about Beverly in terms of her needs and her education, her living situation. Um, but I wonder what is Beverly like today and what is your relationship like with your daughter?

C. Well, uh, it concerns me a little because we have become very, very close. As some of my duties with my other children have kind of evaporated they're older now. They're well able to handle their own affairs and this is what I want them to do. I have no desire to run anybody's life that's for sure. I have enough to do with Beverly but um since November, this is what almost July, but since November, uh, there's been a lack of management in her group home. And I've been very concerned about it and I have been, I go to church on Sunday morning and then uh, after the coffee hour, after I catch up with all my buddies, then I leave and go up to Beverly's house, pick her up, and bring her home for the rest of the afternoon and for dinner and then she stays overnight with me and then I take her to her day program in the morning and that's it. And then I have habitually always gone to her dentist appointments and her gynecological appointments because I think at those times people need a little extra support and I have kiddingly told them at the group home, two of my goals are to keep teeth in her mouth and keep her out of a wheelchair. Uh, I guess time goes so fast it's probably about two years ago she had a bad fall at her day program. It was in the parking lot. She, there was no staff walking with her and she tripped over one of those cement things that they put in front of cars and oh, went down flat, boom! And was in a wheelchair for a couple days until we decided that, well she had her, she was x-rayed. Nothing was broken but until it wasn't quite as sore and she could put weight on it and it is a problem when she's in a wheelchair because Beverly is 5'10. She doesn't look like me really. She looks like her dad's family and her dad. She's 5'10, tall and very slim but she's a big gal and uh, so uh, ever since November uh, there's another client, a client that was placed in Beverly's group home that's really an inappropriate placement. She should be with some, a grouping that is more to her needs; I'll put it that way. First of all Beverly is 57 and her two mates are I'm pretty sure they're both in their probably early fifties. I think Beverly is probably the oldest one now but this gal is 24, full of energy and I don't know where in the autism spectrum is but I've heard the diagnosis and she just… Beverly and her other two clients are very peaceful, quiet. This little gal is very disruptive and at this point the vendor, the agency has hired a one on one during the day, not at night but one on one during the day. And for a while her behavior was really affecting Beverly. I didn't know what the problem was. We really didn't know what the problem was but it was definitely causing Bev some angst. After they found out what the difficulty was and because I was vocal and wrote a letter that things better improve or I was going to have to take some action, uh, they decided, well they had a meeting, we had a meeting and I was told that they were going to hire, that they would like to find another placement but at the moment they didn't have a placement in their set-up and they were going to have to talk to the county as to whether they could come up with an alternative situation and I think that everyone is kind of on the same page; that unfortunately it's just not a good placement for this person. And as I say I feel very bad because you don't want these things to happen but by the same token you can't have one client disrupting the lives of three people when there might be a better situation; not only for them but the other three people. So there's another meeting set up in the next few weeks and they have now, as I say, announced oh I guess it's been three weeks since they hired the one on one with this gal and Beverly said uh, behavior has improved tremendously, tremendously. She's been wonderful. Uh, so it's helped me tremendously. I still feel, because there's two issues; the one issue is the presence of this person that really needs to be, have more, have her needs better met. That's one issue. The other issue is the fact the staffing at the house has been… there was a person there that was the manager and she left in November and ever since then the whole situation just deteriorated and so that hasn't been straightened out yet although they tell me they're working on it so I'm hoping that that's what it is and there's a meeting coming up in the next couple weeks and so we will review the situation but Beverly, until the situation is completely corrected I've been feeling that for her sake, I like to bring her home and let her have a little change of atmosphere for a change and um cook her a home cooked meal. Mother likes to make a home cooked meal and uh because it shouldn't be that they should be able to take the clients out for a meal out or a ride to the park or an outing of some sort which is in her HP. Well they can't do it with this one client that's there because they can't count on her behavior. So nobody gets to go anywhere. So Bev just, you know, of course she has her day program all week which is fine and Saturday is my day. I have to have one day a week that I call my day and that's Saturday. And Sunday as I say, go to church, go up get Bev, bring her home, and we sometimes will take a ride, sometimes we'll go to target. Um sometimes we'll do other things. Uh go see my son that likes to be out in the boondocks. We'll take a ride out and see him. We'll do some things and uh then the next morning her back to her day program and that's been working fine but I have not really had a Sunday off for a long, long, long time but that's okay until I mean she's enjoying being at home and I'm very, as I say, I'm very close to Bev and she will communicate. She says words. It's the strangest thing with Bev and speaking. She will say yes and she'll say no sometimes and she'll say, she's put two words together: me go, you go, go home, eat. She'll say and it's always appropriate. She doesn't… I've been with other folk that have babbled or you know, not Bev. She doesn't say anything but when she says it it's very appropriate. One time and I'll never forget it. It's been some years back but she was home and I was putting her to bed and she got in bed and I was tucking her in and I sat on the side of the bed and I was talking to her about, I don't know what we were talking about or what I was talking about but anyway after a while she looked at me and she said get out of here Mommie. She called me Mommie. Yeah I about fell over. In other words, okay mom enough, you know which was so appropriate and to put that many words together, she never done it again. It just makes me wonder, you know, what's in her head and I'll say to her sometimes, Beverly what are you thinking? Tell mommy what you're thinking. What are you thinking up there in that little head and she'll just look at me and kind of smile, giggle, but no. it's a mystery. It's really a mystery.

23:45:31:27 - 23:46:14:04

L. What does she mean to you?

C. Oh my gosh. I don't want to cry. Don't make me cry. I'm afraid I might. I can't really get into that too heavily. A lot. Yeah, a lot.

L. Do you need a minute?

C. Hmm?

L. Do you need a minute?

C. A deep breath, yes, okay.

L. Sure.

C. Yes. She means everything to me.

23:46:17:27 - 23:47:58:26

L. So, many people, I think, in Chester County, around the state consider you a leader in this field. I wonder if you consider yourself a leader.

C. I guess to a degree I do. I guess to a degree I do. I've had a lot of motivation, that's for sure and I've met so many wonderful people, that's for sure that uh, it's difficult. It's difficult sometimes to uh, as we go through life there are, you know, things that are difficult and uh, I just keep thinking that someday I guess maybe, we're meant to know all the secrets. After one time when I heard Betty White, the one you see on television, and someone asked her about what she thought about death and dying and she said well you know it's funny, she said my mother always used to say when someone passed away or we had an aunt named Betsy or whoever she was, she would say "Well Aunt Betsy passed away, I guess she knows the secrets." And I thought what a neat thing to say. I think that's very true. I guess someday we'll all know the secrets.

23:47:59:24 - 23:53:50:10

L. What do you think has been one of your greatest challenges in life, either personally or in your role as an advocate?

C. I think when I had my triple bypass because I had always been very healthy and I have always been so grateful and so thankful for my health. I don't like being sick; never have. That is not on my schedule. I always say that's not in my book. I don't want to be sick. I have very rarely been sick and as I say I'm eternally grateful but when that surgeon told me that I had three arteries that were pretty well blocked and that a stint wasn't going to do it, I needed open heart surgery, I think that was the biggest jolt that I have ever had in my life. I just was… I couldn't believe it and never having had surgery, I got to the hospital and it was really funny because the nurse is doing the write up or whatever they do and she said you don't wear glasses? And I said no. She said and you have all your teeth? And I said yes. She said… I said I've never been in a hospital before, only to have a baby. You know this is all totally new to me. So knowing the type of operation I was going to have to undergo, they were going to split my chest, take out my heart, put me on a machine, work on my heart, and put it back in and sew me up… it was rather overwhelming and so I had to face facts that this might not work out too well. So I better just prepare, hope for the best and plan for the worst. So I got all my affairs in order and my son took me to the hospital about 6:30 in the morning. I had to wait about three weeks to have the operation done because the surgeon said look, this is not. We're not going to have to take you to the operating room right this moment and you need to make a plan and I mean weeks not months because you could possibly have a serious heart attack. I had never had a heart attack so anyway I made plans and it was about 3 weeks and I went. It'll be about five years in August and I remember going into the operating room thinking well, you know I can't do anything about this situation. I am no longer in control and so needless to say I am a fairly religious person so I did a bit of praying and said if this is it, then that's it and I've had wonderful ride but I sure would like to ride a little further. When I was coming out of the anesthetic, of course they had this big thing down my throat. I warned my friends because I had people there waiting for me to come out. My poor son was a nervous wreck and so anyway I told them you know I'm going to look terrible so don't get upset. I know I'm just going to look horrible and so anyway when I came out of the surgery, I open my eyes and this thing is down my throat and all these jars and pipes and everything else and I saw these people standing there and I thought well I guess I must've made it. Either that or there's been a mass accident somewhere. All these peoples are riding along with me but anyway it wasn't long before I came out of it and realized that I made it but it certainly changes your perspective a little. It really does. You start to be thankful every day, every day, I'm thankful. Every morning when I get up, no matter even when… I sound like Pollyanna but even if it's a lousy day I think there are no lousy days. There really aren't, no. So I'm just grateful and then I've had both of my knees replaced and uh I was a little concerned about that; the first one and I remember saying to the doctors, nurse "Do you ever operate on people that have had a heart operation?" "Oh are you kidding?" she said "Of course we do all the time." I said oh good. So anyway I had my one knee done and I really had nerve enough to go back and have the other one done and that's it. I'm done for a while. I hope.

L. You should be in good shape for the next fifty.

C. I hope so; I hope so because it's been wonderful. It's been a great ride and I loved every second of it and I have no complaints and no regrets. I always say I sleep very well at night because it always amazes me when they talk about, uh, oh some of the programs that you see about people have a secret or they have something to hide. I heard somebody say once "He who hides nothing has nothing to hide" and I guess that's me. What you see is what you get. That's all there is to it.

23:53:50:15 - 23:54:28:16

L. Charlotte I wonder what you think one of your biggest accomplishments has been?

C. Oh my gosh.

L. Or one you take the most pride in.

C. I really think I take the most pride in my work with the mentally challenged. Yeah, definitely, definitely, yeah, yeah.

23:54:28:17 - 23:58:47:08

L. Charlotte I'm wondering who has been the biggest influence on your life and what did that person teach you?

C. I would have to say that it was my mother. Again I'm going to try to say this without tearing up but she was fantastic. She was the oldest in her family. She had three other siblings and her youngest sibling, a boy, was born with a heart defect. In fact heart disease is the only that really has run in my family on both sides. Other than that we've been very healthy but there is some heart disease there. And he had, I think, back in those days what they called… he was like a blue baby or a leaking heart but today they could have fixed it in you know, time but back then and he passed away when he was about seven and my mother adored him and took care of him a lot and so forth and so on. And um she was just a person that, my gosh, I mean everybody um, everybody just adored her. She, she was uh, she was always a help to anybody that wanted help and she was very close to her mother; took care of her mother a lot. My grandmother was never really, really down ill but needed a little help once in a while and my mother always was there. And she was very close to her sister and close to her brother. Her brother was a bachelor and always lived with the mother. And uh, she just, oh my gosh, she just she was wonderful. I mean she was wise, very wise woman, very wise and as I may have mentioned at one time or another when this happened with Beverly, she was sympathetic to the point but after she just got tired of me feeling sorry for myself for about a week, uh, one day she didn't live too far from me so she would be over at my house or I'd stop in at hers but she said to me "If you don't snap out of this, I'm more concerned about you than I am about that child." She said "You have other people in your family to live for and you just got to stop this and pull yourself together." And you know it was so unusual for my mother to talk to me like that I was like taken back and I thought for a minute, you know, and then I thought well you know what, she's right. She's absolutely right and I, I have to pull myself together because this isn't going to change and I've got to cope with it and I can't do it just carrying on the way I am so let's get with the program so but she was, she was fabulous and my father wasn't an easy person to live with. He was very controlling but she went along with everything pretty well and she lived with her mother in law for her whole married life really and uh her mother in law, she wasn't really. She was very nice and a good person but she was kind of straight laced. She was a little strict and my mom was a little more laid back but she was, she was fabulous and I think of her constantly. Yeah, she was great; a great influence. I wish everybody could have one just like her. That would be great.

L. Thank you.