Oral History Program Shirley Connell Interviewed by Alexandria Chamberlain 27 November 2008 i Oral History Program Weber State University Stewart Library Ogden, Utah Shirley Connell Interviewed by Alexandria Chamberlain 27 November 2008 Copyright © 2012 by Weber State University, Stewart Library ii Mission Statement The Oral History Program of the Stewart Library was created to preserve the institutional history of Weber State University and the Davis, Ogden and Weber County communities. By conducting carefully researched, recorded, and transcribed interviews, the Oral History Program creates archival oral histories intended for the widest possible use. Interviews are conducted with the goal of eliciting from each participant a full and accurate account of events. The interviews are transcribed, edited for accuracy and clarity, and reviewed by the interviewees (as available), who are encouraged to augment or correct their spoken words. The reviewed and corrected transcripts are indexed, printed, and bound with photographs and illustrative materials as available. Archival copies are placed in University Archives. The Stewart Library also houses the original recording so researchers can gain a sense of the interviewee's voice and intonations. Project Description The Weber State College/University Student Projects have been created by students working with several different professors on the Weber State campus. The topics are varied and based on the student's interest or task for a specific assignment. These oral history assignments were created to help Weber State students learn the value and importance of recording public history and to benefit the expansion of the Weber State oral history collections. ____________________________________ Oral history is a method of collecting historical information through recorded interviews between a narrator with firsthand knowledge of historically significant events and a well-informed interviewer, with the goal of preserving substantive additions to the historical record. Because it is primary material, oral history is not intended to present the final, verified, or complete narrative of events. It is a spoken account. It reflects personal opinion offered by the interviewee in response to questioning, and as such it is partisan, deeply involved, and irreplaceable. ____________________________________ Rights Management All literary rights in the manuscript, including the right to publish, are reserved to the Stewart Library of Weber State University. No part of the manuscript may be published without the written permission of the University Librarian. Requests for permission to publish should be addressed to the Administration Office, Stewart Library, Weber State University, Ogden, Utah, 84408. The request should include identification of the specific item and identification of the user. It is recommended that this oral history be cited as follows: Connell, Shirley, an oral history by Alexandria Chamberlain, 27 November 2008, WSU Stewart Library Oral History Program, University Archives, Stewart Library, Weber State University, Ogden, UT. iii Abstract: The following is an oral history interview with Shirley Connell. The interview was conducted on November 27, 2008, by Alexandria Chamberlain, in Syracuse, New York. Connell discusses her experience with being married to a man who was diagnosed with dementia two years after he retired from the United States Air Force. AC: Hi Shirley, tell me a little about how you met your husband Bob. SC: Well, let’s see. I knew Bob when I was married to one of his coworkers, his name was Bob too. They worked together in the military and they were good friends. In the summer of 1987 my first husband and our family were on a summer vacation to the Cape. We loved to vacation on the Cape. There are a lot of memories from those vacations, you know. When we got to the Cape, Bob was not feeling well. I took him to the hospital there and before we knew it we were being told that he had cancer and would probably not live to see the Cape next summer. Nice way to start a vacation. We decided not to tell the children until the vacation was done and we were back here in Syracuse. The next 5 months were hell. Bob would get sick very quick. His friend Bob was there for all of the bad times. I never thought that I would end up falling in love again. AC: When did you and Bob start to date? SC: Hmmm. It was in 1990, yeah, three years after Bob died. I called him one day, I still don't know why. I think I was a little lonely and I missed having someone to talk to. My oldest daughter was out of the house and my youngest was about to graduate and I was getting a little nervous about the empty house. After the first phone call we decided 1 to meet at my house to have coffee. Bob really likes his coffee, he still does today, he just can't make it himself, you know, it is the disease. He wants to make it but he can't. It is very sad and it makes him very mad. AC: When did you get married? SC: We waited a while. Bob still had some children at home from his first marriage. He was also deployed to the Persian Gulf for the first war. I think it was that war that...well...let’s say this, there are a lot of people from Bob's unit that came home sick. Too many have died too early. Sad. I think Bob finally blames that war on his problems. At first he did not want to talk about it. I really think that he did not believe the pills they gave him would ever hurt him. The VA is very good with taking care of him, but I think they are finally seeing that those damn pills he was given were dangerous and poison. He is 60 years old and he can't do anything! It is so hard to watch. AC: What does Bob do during the day? SC: Well, I finally convinced the doctor to give him a sleeping pill. This way he will sleep at night, so now he sleeps in. He would always get up at 6 o'clock in the morning, now he is usually still in bed at 9 o'clock. I did not see our retirement being this way. When he gets up he is really groggy. However he is probably at his sharpest in the morning and early afternoon. I will help him get dressed; he is confused as to the front and back of a shirt, and what to put on first. I have to shave him. He likes t razor, however he is on a blood thinner because of the heart problem. I finally convinced him to get an electric shaver, but he does not like it. When he is dressed he will go to the kitchen and eat some breakfast. One banana and then he will make some instant breakfast, I hate the instant breakfast but Bob loves it, his favorite is vanilla, oh and a peanut butter and jelly 2 sandwich. You should see all of the jelly he puts on his sandwich. He always talks about how much he loves the sandwich; he makes a sound as he eats it. I wonder if he has a memory of his childhood when he eats it. Oh, and he takes his pills, so many pills, he looks at them, examining almost like he is damning the pills as he eats them. I have to watch him very carefully so he does not take the wrong day or that he takes the night pills and not the day pills. He did that once, I thought I was going to go through the roof! AC: Then what does Bob do? SC: He will sit in his chair and watch the TV. He has his favorite TV shows. The History Channel and the local news. He will look at the paper. This is sad. He cannot read any of it, but he tries. He can read a word or two, but he cannot put the story together. He does spend most of the time with the obituary section. I try to have a list of things that we need to do every day. You know, he needs to stay active. So, I try to have him do a few chores, chores that he cannot hurt himself with. He has a cat, that damn cat does not like me! Scratches me, you should see the scratches. Bob has to feed Mr. Whiskers and then he has to change the litter box. This will take him a little over an hour. That is because he forgets what he is supposed to be doing so I have to drop little reminders like "did Mr. Whiskers make a mess of his box?" and Bob will go, "oh, yeah I need to finish that". AC: Has having the cat helped him? SC: Well, I tried to get Bob a part time job at the animal society down the road. You know, keep the animals company, feed them and what not. He went one day and he was lost. So that did not work out. When I went to pick him up he showed me Mr. Whiskers. We had a cat like him years ago. So we asked about adopting him and about a week later 3 we picked up Mr. Whiskers. Bob really wants a buddy, a dog. I don't want to be taking care of a dog and I know I will have to take care of it, so there was no way I was going to get Bob a dog. So Mr. Whiskers is his cat. He will sit on Bob's lap, sleep on his side of the bed and he hates me! Scratches me, did you see this one; this was because he was hungry, little shit! The good thing is that it occupies Bob during the day. AC: Tell me about the diagnoses. SC: That was a bad day. Bob had a hard time tying his tie. I noticed that he started to wear sweaters over his oxfords instead on ties; lie retired from the military and went to work for the American Red Cross and a budget analyst. I watched him one morning trying to tie his tie. Bob was a boy scout. He wore a tie to his military job every day. He could not tie his tie, you know, he could not tie his tie, how can you all of a sudden not tie you tie? I knew something was wrong, you know I really did, how can he not be able to tie his tie? He told me he was tired. About a week later he came downstairs with the tie in his hand and he looked at me with confusion. You know, Bob told me he could not tie his tie. He was 54. How can he not tie his tie? So we went to the VA for a checkup and they decided to take a look at a few things. Before we knew it they were talking about white matter around his motor skills part of his brain. They mentioned the word dementia. Bob looked at me like he had no idea what they were talking about. When the doctor said Alzheimer I knew this was not good. Bob was made. He did not talk on the way home. Bob told me when we got home that he was just tired, he had a cold and that he would be better soon. Bob stopped working at the American Red Cross about a month later. AC: What is the outlook? 4 SC: Shitty! This is not what I wanted my retirement to be like. We wanted to travel and see the world. Bob spent thirty plus years serving his country and they give him this shit. You know, he is losing all of his motor skills; anything that is sequential order is shot. What comes first now comes fourth. He cannot dial a phone. He cannot type on the computer. This nasty mean disease is slowing killing him. The hardest thing to watch is that he is still smart. He has his, how do I say this, he has his, umm, knowledge of what is going on. You know, He knows what he wants to say, but a word is a set of letter sin sequence, he cannot spit them out. I want to yell at him to spit it out BOB! But I can't. I have to be patient and let him try. I will try to say the words for him. Opening his eyes is a motor skill, did you know that, open your eyes, see that is a motor skill. Bob will lose control over that function. I am ten years older than him; I just hope to be around to take care of him. If I leave him alone his dementia will go up a few levels. I had to leave him in the hospital overnight. You know, when I came back the next morning he was a mess! He did not know who I was, who he was, where he was, he told me he was surrounded by scrambled eggs. So that night I slept by his side in the hospital so he would sleep. I cried that night, I felt so bad for this strong and smart man who I fell in love with. You know, we were supposed to be driving around the country, seeing Europe and now I am sleeping by his bed in a hospital. AC: What has been the hardest part so far? SC: Oh, that is easy, he is still very mad at me for this. He will get really quiet every now and then and when I ask him what is wrong he just folds his hands and tells me he want to go out. So I ask him where, and I let him know that I will take him wherever he wants to go. He gets very mad and tells me he wants to drive himself. You know, he can't damn 5 it! He can't. He almost killed someone driving so in 2006 they took his driver’s license. You know, they needed to take it away! He did know if he should stop and then look both ways, or look both ways as he goes through a stop sign. You know, I was scared to drive with him. He almost killed someone driving! He would not do well if he hurt someone. He is gentle. But you know, he gets very mad at me. He thinks I took it away from him. That is what we fight about. The car. I sold his car, you know, I did. He was mad. He did not want to come out and watch the people buy it, you know. He was mad. He wants to go fishing by himself. You know I am boring and I don't want to go to his favorite spots. I need to be by a bathroom, you know I have problems too. So I need to use the bathroom a lot. That was a tuff day. It was his doctor that took the license away. She would not write a note to get him his license back. He was so made at her. You know, he told me that Dr. Kathy and I were out to get him that we were trying to punish him. He will tell you that he is a good driver. You know if you ask him about the accident he will not talk about it. It is like it never happened, he almost killed someone! AC: What happened with the car accident? SC: Oh, the one that never happened? He was in the driveway at my daughter's house. It was the end of the day and he was tired, so I guess that was a bad move to ask him to move a car from the garage to the driveway. He was tired; he should not have been behind the wheel. He wanted to do it. But he became very confused, you know, that is what happens to him, he gets confused. He tough the gas was the break and the break was the gas. He slammed on the break, except it was not the break and the car was in reverse. Jim my son-in-law was in the garage and Bob missed him by about 12 inches. Jim would have been dead you know. Then Bob panics and puts the car in drive and 6 hits the gas again, not he is heading all over their nice grass and there is a police officer who lives next door, thank God he was home in his yard. The police officer got Bob to stop, you know, and the police officer said Bob was "not there"; he seemed to have checked out. Bob does not remember any of this, you know, it was scary, Jim could have been killed, if the kids were outside they could have been killed. The riding mower was destroyed, and there was damage to the garage. Bob does not remember any of it, you know he does not remember any of it, how do you not remember any of it? They say under stress the dementia will go up a few levels of severity, you know his must have gone way up! The police officer wrote him a citation. Bob had to go and retake his driver's license test. You know, he was mad! He could not read the test and he could not answer the questions. He was so mad at me and Dr. Kathy for having to retake the test. He was very mad; you know he would not talk to me for weeks. Only that damn cat who does not like me. AC: Do you think that you will be able to keep him at your house, or will you look for some assistance? SC: He loves his backyard. Before Bob became...well, before today he told me that if he cannot clean himself that I need to put him in a home. I have seen what he is like in the hospital, you know, I can't do that. You know, I love him. I want to take care of him. He likes his backyard. You know, there are a lot of birds back there. Just the other day there was a turkey in our back yard, he was a big turkey, Bob was so excited. Bob loved to be outdoors when he was healthy. He would fish, hunt and camp in the mountains here. That is what he wanted to do with retirement. He wanted to see Yellowstone National Park. He has not seen it. You know, he can't fly anymore. Maybe someday he 7 can see Yellowstone. You know I think he would like that a lot. I want to go to Hawaii, and I will probably never go. So we will stay here as long as we can. You know, he trusts me, and he needs me. I will take care of him. AC: What does the military do for him? SC: Oh, he is covered. I mean health care you know. He is a 100% disabled Veterans so all of his medical care is free. You know, I would have had to sell the house if he did not have that. He also gets a retirement check from the military too, you know that helps. We are retired now so any help is great. Bob misses the base. You know, he would go to work on his day off, and he just liked being there. I take him to the base every now and then, but it is getting harder. People ask him why he is not driving, they talk to fast, and you know I want to yell at them! They are so stupid; don't they know he is sick? He was a recruiter so he knows a lot of the people there on the base. He loved the base; you know they loved him too. AC: Do you get a vacation? SC: What is that? I go to Vermont to visit my older daughter and her kids. Bob will drive with me, he can't stay home alone. I put his head phones on him and he listens to his country music. He would give me directions, but now they confuse him. So he just watches the road and listens to his music. He does not like being around a lot of people, so we don't stay long. AC: How has this disease changed you? SC: Well, let me tell you three words. Stem cell research! Why don't people want to do it, you know? Don't they see people like Bob who could benefit from it? Oh, I am mad at 8 the War in Iraq. I am mad at the cover up by the military. You know, they lied. Bob was a good, very good, and proud, and a decent military person. He never ever believed that they would do this. They did do this! Why are we letting our young soldiers die over there? Oh, I get very upset at all of this. Bob too! He gets mad. He does not like that President Bush. He is a stupid man, who... well... I will stop there. AC: That is probably a good spot to stop. Thank you for the time and well, thank you for your story. SC: O h, well, I have to say this. Bob is a good man...he loves his country...we go to the parades for the holidays. I take him to the cemetery on Veterans Day and Memorial Day, and he knows what those holidays are. Bob is a patriotic and a loving man who loves his country. You know he once told me that it could be worse, that he could have cancer. My first husband had cancer and my second husband now has dementia, you know, I think I would rather have Bob have cancer so there suffering was shorter. Bob is smart; he is a very smart man he knows what is going on. I think that what makes this sad. Please tell people to support the stem cell research so no one has to go through this. 9 Summary of Oral History Interview On Thanksgiving night in 2008 I took some time to interview a lady in upstate New York about her husband. I was back in New York for the holiday so I decided it would be a great time to do my oral history report. The lady I interviewed was the wife of a man who recently retired from the military. The man, Bob, had spent nearly 34 years serving his country and months after he retired he was diagnosed with dementia. The interview is about how they met, and how they discovered the disease and what it has done to Bob and Shirley. This was a tough interview. My father has dementia, and he was in the military. The people I interviewed was someone my stepmother had met at the VA hospital and they have become friends. When I arrived home looking for someone to interview she told me about Shirley and that she was going to be coming over for pie on Thanksgiving night. Bob and my dad will sit in the living room and watch TV together. Shirley was more than happy to do the interview. At the end, she did however ask me not to submit it for publication. I was curious, so I asked her if any of my questions led her to not wanting the tape published. She paused for a bit and told me that the questions were great and that she enjoyed doing the interview. She did not want her comments about the President to be out there. By the end of the evening I could tell that she was a proud woman who truly loves her husband. She also loves her country and the men and women in uniform; however she is very mad with President Bush. 10